SATURDAY, MARCH 01, 2008 04:44 PM, CST
Before I update I want to ask all that are able to go and donate blood. You don't have to do it in Levi's name, but the blood bank around here
has a really bad shortage. I think they really need O, but I am sure they would be happy to get any they can. You are saving a life when you
do it. Don't put it off, just go and do it. Levi's life has been saved many many times thanks to the compassion of blood donors!!!
--Well, Levi got gassed up on blood yesterday. He should be good for another month or so. We were at UK from about 12:00pm to 9:00pm
for 3 hours worth of blood. First, they didn't start it until 3 because they had to wait until they got ahold of the doctor and get orders and they
also had to type and cross him again and we had to wait for the blood to come. He started getting the blood at about 3 and at around 5
(they were checking his blood sugar every hour) it dropped to around 45 I think. It started at 61. So they had to stop the blood for a while
and give him some dextrose(sugar) to bring his blood sugar back up. (He had to be unhooked from his TPN which has a HIGH amount of
sugar. Blood isn't compatible with anything. So when it is stopped abruptly then his sugar starts to bottom out.) While they were giving him
the dextrose, they tried to start another IV so he could be getting the TPN at the same time and we wouldn't have to watch his sugar so
close, but after 2 attempts and lots of looking, that didn't work. So they finished out his blood, about another hour and hooked him back up
to his TPN. They wanted us to stay about an hour afterwards to make sure his sugar was where it needed to be. So it was right at 9 pm
when we left. I knew we would be there a while, but didn't expect it to be that long. I thought maybe 6 at the latest. I'll know better next time.
Other than the sugar issue he did really good.
--He got to visit some of his old friends and he saw Dr. Shashidhar, who he hadn't seen since November. The nurses were really nice and
all the ones that has had him before came by to say hi. They said he was getting so big! I guess he has grown a bit since they saw him
last. We hadn't been up there since the first of the year when he had RSV.
I haven't heard anything about the results of the ultrasound he had Thursday or about his new score. I figure they will probably call Monday.
--Take care.
Love ya!
Laurie
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WEDNESDAY, MARCH 05, 2008 09:22 PM, EST
Lots going on today so get comfortable...
--First, we are in Cincinnati. No, it wasn't a fever this time. Something new, something different. Last night about 2 am he threw up a little
bit of blood. It was about 2-3 tbs. It was a brownish color and was mixed with his formula. More blood than formula though. Earlier that
morning I thought I had seen a tiny bit of blood in his diaper, but wasn't sure it was blood until he threw some up. So we called UK, since
the docs there know us really well to see what they wanted us to do. She told us to take him to the ER there at home and she would call
Cincy to see what they wanted to do. I got to the ER around 2:30am and they drew some blood. (The ER doc he saw was the same doc he
had the night this all happened to him when he was 2 weeks old--so it was nice to see him again, but not under the circumstances.) We
waited there until they arranged transport, but didn't leave until about 6:30 am. You know how ER visits are. We got to Cincy about 9:30am.
Since he didn't have a room yet, he was taken to the ER here. We saw ER docs and the GI fellows also came to see him. We didn't get our
room until about 4:30 pm today.
--He has only thrown up a couple times since the 2 am incident and it was not near as much blood. They said it could be irritation from his
NG tube, but they want to do a scope tomorrow because there is no way to know for sure what it is without actually looking at it. They said it
could be varices on the esophagus bleeding.(ESOPHAGEAL VARICES --there is a link to explain what that is) it is basically varicose veins
on the esophagus. He is scheduled for a scope as an add-on tomorrow so we aren't sure what time it will be. Also his bloodwork showed
his platelets are on the low side. Not so low that it is below the normal number, but they said since they are low and he is having bleeding
it isn't helping matters any. His hemoglobin is down a little, but it don't surprise me even though he just had a transfusion Friday because
they have been drawing a lot of blood. They are doing more labs tomorrow and they said they will decide from there if he may need
platelets or red blood cells or both.
--Also, his bilirubin has gone up again. It is now 20. something. No, they haven't called about his updated score from last week and I hope
they will try to adjust it again based on his bili level this week.
--So they are just watching him right now. They said if we lived closer they would've felt comfortable sending us home, but since we are so
far away they thought it to be best to keep him in case something happens. If we went home, we would have to drive all the way back.
That's the plan for now. It will probably change tomorrow after the labs are done. I'm not sure how long we will be here. They are just giving
it until tomorrow's labs and going from there.
--On a lighter note, Levi did have his visit from the person from FIRST STEPS yesterday afternoon. They aren't as concerned about his
motor skills right now as they are his sensory (eating). She is recommending him for occupational therapy to help him with eating.
Hopefully we can start getting him to eat a little. She said from there then they would consider physical therapy. She said he was very smart
and developing very well cognitively. So it was pleasing to finally have him assessed and know that they can help him.
--I think that is all for now. Oh, his PICC site is looking much better. It is healing up really well. We are using a dressing called covaderm. It
seems to be doing ok so far. He has such sensitive skin and it doesn't take much for him to develop a sensitivity to anything.
--Take care. I'll update as soon as I know anything different. Keep him in your prayers.
THE ROOM NUMBER IS 513-636-9509 so we aren't roaming on our cell phone if you call.
---Laurie
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THURSDAY, MARCH 06, 2008 11:08 AM, EST
I have a little to update. They just rounded so we know a lttle more of the plan. His bloodwork hadn't changed much since yesterday which
is good. They would expect his hemoglobin to go down if he was actively bleeding. But it has stayed the same. Also, he hasn't thrown up
anymore blood nor has any come out the other end. It has been normal poop color(for him). He is supposed to go down for the scope at
11:30 or 12. They said as long as the scope was ok, we could go home. Then the debate over whether or not he needs blood began. The
attending said he didn't think he needed any. That his blood was at an ok level. He seemed to have the say-so, but Dr. Kocoshis' nurse
was also there and spoke up. She said Dr. K would want him to be transfused instead of waiting until his next labs (next week) and getting
it then. Obviously there is a difference of opinion, but our Doc gets the say-so. So he is getting blood after the scope. No platelets though,
they said they are chronically staying low and they didn't want to expose him to anymore blood products than they had to and the low count
isn't causing him any problems.
--Hopefully the reason for the bleeding is just irritation from the NG tube.
--Also after the docs left from rounds, his nurse from clinic stayed to talk to us. I asked her if she knew his updated score and she went
and found out for us. It is 52. Robin asked how high that score can go because we had looked on the net and hadn't gotten a definite
answer. She said she wasn't sure. I don't think there is a definite cut-off. She said once it gets so high they start having bleeding issues
and start getting transfused more often. Once they get to a point that they are transfused once a week and they put them in ICU, that puts
them at a STATUS 1B. And that is the absolute highest. She said that they may not need to be in ICU for the blood, but they sometimes put
them there to satisfy the criteria of being a STATUS 1B and that helps their place on the list. So as long as he is needing blood once a
week they may put him in ICU to keep him as a STATUS 1B. That day may be coming. He is needing it more and more frequently. He's
been going about a month. I don't think this time counts because they have taken out as much as they put in Friday and that has caused it
to go down again. I think it's once that he is needing it on a regular basis once a week. She said they will be updating his score again next
Friday.
--Also I noticed at rounds that I thought they said his Bilirubin was 13 something, so what I heard yesterday at Somerset may have been a
different bili number. It may have been the total or something. Cause they didn't say anything about it being higher and I would think that
they would address that. So if it was 13 then it has came down instead of going up. I will have to get that clarified.
---As far as going home. I think we will probably have to stay another night because once everything is finished today it will be late. As long
as the scope is ok, we will probably leave in the morning. Talk to you all later. Thanks for the prayers. Keep 'em comin'.
--Laurie :)
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THURSDAY, MARCH 06, 2008 08:35 PM, EST
Another update today...
--He had his scope. He did really well. His esophagus looked really good. There were no varices---the thing they were worried about most.
So that was good news. Also they found a few ulcers on what's left of his small intestine just past his stomach and his stomach was a
little red and inflamed. So they said they would switch around his antacid a little to help with that. Also they did biopsy the places they saw
and because of that they decided to give him the platelets (plasma). Once he got that they started the red blood cells. They had trouble with
the glucose yet again, but got it under control. Then about 6:15pm one of the docs came in and said that
--THEY FOUND AND ACCEPTED ORGANS FOR LEVI!!!!
YEA!!YEA!!!YEA!!!
--I looked at this man I met just yesterday and I still haven't caught his name and started bawling and said "Thank you" and gave him a big
hug!!! I was in disbelief. I cannot tell you how good it feels. It is like an adrenaline rush like I've never experienced. They should bottle those
endorphines... people would really become addicted. So they sent out the crew to harvest the organs. We are just waiting now and they are
doing tests and stuff to get ready. They said it would be later on tonight sometime, but don't know exactly what time.
---Our prayers, your prayers, everyone's prayers have been answered. Thank the Lord God tonight. Keep Levi in your thoughts tonight as
this will be a long and delicate surgery. They said 6-10 hours or maybe longer.
--I will update as I can. I have the laptop and I think there is access in the waiting room.
Also on a funny note....
A few minutes after we were told and I was crying. The nurses were putting his NG tube back in because it had been taken out after the
scope. Well, the Child life specialist(they bring toys and books for the patients and movies and cards for parents to keep them occupied)
came in. She saw me crying and i looked at her and hugged her (I was hugging everyone). Anyway she starts saying. Oh it'll be ok. Once
they get it down it's in. He'll be ok. I started laughing. I said, "I'm not crying about the NG tube. It's a happy cry. He is getting his organs!!"
She looked like she felt stupid. I got a good laugh.
Keep prayin' I'll update more later.
--I love you all. Thank you so much. Keep the family that lost their precious one. Say a prayer for that family. In their time of loss, they
unselfishly gave the greatest gift of all. I will be forever in debt to them.
Laurie
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FRIDAY, MARCH 07, 2008 09:18 AM, EST
Yea,Yea,Yea!!!!
It's been a rough nite. I know I said I'd update through the night, but the room we were in didn't have internet access. Just outside that room
is access, but I didn't feel like running in here every hour. So, I will give you a timeline of what has happened throughout the night. I know
you all are dying to know. Also I will give you all a new phone number where to reach us when he is out of surgery and in ICU. i am just
calling a few people and letting it spread by word of mouth and I will update again once we are settled in the room.
--From the time we found out until they took him back, they did lots of tests. They did an xray, EKG, lots of blood work, and catheterized him
to get a urine sample. We were told that the surgery was scheduled around 1 or 1:30 am, but he didn't actually head to the OR until about
3am. He slept most of the evening and through the night, but woke up right before they came to get us. He was bright eyed and in a good
mood. He had the hiccups. We were in the holding room with him for just a little while and they took him to the OR at about 3:30am. They
were fighting over who got to carry him back. The surgeon said she never got to carry the babies so they let her carry him back. He was
grabbing at her mask as they walked back through the door.
430am update: getting more IV lines started. He was looking around at everyone grabbing at things and they put the mask on him and he
went to sleep easily. And they had put the breathing tube in.
515am update: Made first incision
621am update: Working on getting old organs out. Had taken spleen out( to make room--he won't have a spleen) Things going ok. Vital
signs stable.
730 update: still working on getting organs out. Started getting blood products. Vital signs still ok.
820 update: Organs just getting here. They had slowed down the process. They were ready for the organs. They preparing to take the liver
out. This would be the longest process--taking the liver out. Actual transplant itself will be quick because they work fast. They were just
waiting on the organs. He is just hanging out.
9am update: Now they are working on the new organs. I asked the coordinator (updater) if she might have an idea of how much longer
and she said she guessed it wouldn't be done before 12pm. So.. hopefully not much longer.
--So he is in the most critical point now. Please keep praying he does well. I will update as soon as I can. I love you all and thank you so
much for all the love and support you have given me and my family and especially that precious little angel back there. God bless you all. i
wish I could hug you all. So **CYBER HUGS**!!
--Laurie
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FRIDAY, MARCH 07, 2008 04:15 PM, EST
Ok, I know this is the update you all been waiting for. Levi is out of surgery and in ICU now. He looks good-- better than I expected. I
expected him to be really puffy and he really isn't. He opened his eyes just right after we walked into the room. They weren't open long, but I
know he knows we are here. They have him on a lot of sedation and pain meds, and will be for a while.
--Here's the timeline from when I left off through now:
1030am update: getting ready to put in new liver and connect vessels.
1130 update: bowel and liver in and doing good. When the clamps on the blood vessels were released, the blood flowed in and the bowel
pinkened back up just like expected. Now making stomas(an opening through the abdomen). And making a G tube that will go to his
stomach.
1pm update: HE'S FINISHED!! He did good. Surgeons and everyone came out to explain things. 1st they said when they opened him up
they removed his spleen. It was HUGE. They also removed 1/2 of his colon. Both of which made room for the new organs. The donor was
smaller than Levi, so everything fit pretty good. The donor was only 4 weeks old. (Please say a prayer for that family today) They did close
his belly, but only the skin layer. They left the muscle layer open and will do a second surgery in about a week to close that layer. They will
also do the first biopsy at that same time. Something they will have to be careful about in the next few weeks when they do the biopsies.
They said it is really easily perforated so they have to take extreme caution when doing them, but they have to be done to check for rejection
as there is no blood test to check for rejection only actually looking at it.
So there we have it. He looks good and is doing great. Keep praying, the next few weeks will be the most critical.
A list of new things Levi has:
1) Small bowel, liver and pancreas
2) a tube down each side of his nose (one for suction, one for putting meds, feeds etc)
3) 2 stomas. one is connected to his small intestine, one his colon
4) several new IV and arterial lines
5) breathing tube
6) 2 drains
7) a G tube
--I think that's all, but he's got a lot going on and I could have forgotten something. Most of which they will gradually be taking out. Some
thing like the stomas and the G tube will be there for a while.
thank you all again for everything. I love you all.
Laurie
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SATURDAY, MARCH 08, 2008 08:52 AM, EST
Me and Robin headed to bed about 9 last night. We were completely tuckered. We got a sleep room just down the hall. We were allowed to
stay in the room with Levi, but I felt comfortable leaving and I thought we would rest better in a quiet room. The last couple of nights haven't
been that restful. Besides, Levi is a one-on-one with the nurse, so I knew he was being watched like a hawk and he seemed pretty stable.
When the nurse isn't in the room she is sitting just outside the door.
--This morning, things are going ok. Yesterday evening they did another ultrasound (they did one right after surgery) to check for blood flow
around the new organs. The surgeon was in here at the time. She seemed pleased and said that it looked better than the earlier one. They
will be doing one everyday for several days to monitor it.
--He is a little puffier this morning, but did well overnight. The nurse said his vitals had been good all night. No major issues. They haven't
rounded yet, but will be shortly and I assume we will get a better idea of what the rest of today will have in store.
--The only issue they have been having with him is keeping him knocked out. The doctors have said it takes a WHOLE LOT of drugs to
keep these little ones knocked out. They said what he is on would lay someone like me or you flat out or more, yet he still keeps wiggling
around. So they dealt with that during the night trying to keep him still. They don't want him moving around a whole lot because of his
breathing tube. But even when we came in this morning, he was moving his head back and forth and trying to move his arms and legs, but
they have his hands restrained. The nurse told me this morning that they may try to wean him off the breathing tube today so they won't
have to give him so much medicine to keep him out. I guess we will see what they say about that in rounds.
--I forgot to put the new room phone number on the last update so here it is: 513-636-3095. There it is if any of you are wanting to call.
Also I got a picture of him with our laptop today. I didn't put it on the welcome page because for some of you it may be hard to look at. I just
put it in the photos that way you can look at it if you want and if you don't, you don't have to. It's really not that bad to me, but I know some
people get queasy and I didn't want to shock anyone when they first opened the page. So it's there if you wanna see it. I know some of you
wanted a picture.--(BETH!) lol I will also email it to any of you if you want it and I made a short little video too. It just says this is the day after
transplant and we love you all and shows Levi. I will send either or both via email to you just leave me an email at llg12480@aol.com or
sign the guestbook and let me know.
......Apparently they just rounded and I didn't know it. I am sitting behind a pole and couldn't see outside the door. The nurse said the plan
for today is to take him off the sedation and get the breathing tube out. YEA! So sounds like a big day. I will probably update later today to let
you all know how that goes.
--Talk to you all later. Thanks for all the guestbook signings. I think I got a lot from people I haven't even spoken to before. So thank you for
signing. It means a lot. I really appreciate all the kind words from all of you. I love you all--I really do and I hope you know it. You all have
gotten me through this and will help me get through from now on. Levi has a really big extended "family". I never knew a little boy with so
many people that cared about him.
Take care. We love you!!
Laurie, Robin, & LEVI
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SATURDAY, MARCH 08, 2008 07:48 PM, CST
Not much has happened since my last update. They finally got him extubated(took the breathing tube out) around 6pm. It took forever to get
him woke up enough to do it. He has been doing good and breathing on his own. The only thing is where they had him more awake, he
started feeling more pain. He was trying to cry the best he could a while ago and it just broke my heart. They quickly got him some
morphine and he is resting good now. He also has had his eyes open, but it was when he was mad. I still think he was out of it he didn't
act like he recognized me, but it was still good to see those baby blues.
--How much snow did you all get? Here in Cincinnati there is around a foot. We heard on the news we are in a level 3 snow emergency. It
said if you don't have a really good reason to be out on the roads, then they can arrest you! Have you ever heard of such. I just thought that
was funny.
--So far so good with Levi.
That's all 'til tomorrow.
Laurie
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SUNDAY, MARCH 09, 2008 03:16 PM, EDT
Ok, here goes for the fourth time. I am so aggravated. I've typed his update 3 times already today. The computer just isn't cooperating. The
first time was my fault, but the other 2 times it said my session had timed out and I know it hadn't. Each time I was finished and trying to
save it when I lost everything. URGHHHH!!
--Levi is doing good today. We slept later today and missed rounds, and it didn't help that time went forward. The nurse told me the
surgeon had been in and removed one of his drains. (He had 2 JP drains and she removed one of them). The surgeon also removed the
dressing over his stitches. It looks really good.
--His eyes are a lot less puffy today. I looked at the whites in his eyes today and they were WHITE!! Imagine that! The whites were white!
Not yellow. He has been more awake today, but he has also been crying more today when he is awake. I know he is hurting really bad. He
wakes up about every 2 hours and cries and they have to give him more morphine. Then he goes right back to sleep. I know each day will
get better though. The only sad thing is that they will be taking him back to surgery in a few days to stitch up the muscle layer and we will
have to start all over again. But hopefully with the muscle layer sewn up it won't put so much pressure on the skin to hold the incision shut
and hopefully it won't hurt as bad.
--I have more good news today. A friend I met at a support group on yahoo wrote me and told me that her daughter,Kaylee, had her
transplant Friday too!!! You may have seen where she signed the guestbook today. Her website is www.caringbridge.org/visit/kaylee1
--Stop by and wish her the best.
Talk to you later.
Laurie
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MONDAY, MARCH 10, 2008 07:30 AM, EDT
Today is one of the bad days of this journey. Not terrible, but definitely a small setback.
--Yesterday evening he started having trouble with one of his lungs. And also his urine output had went down and they were watching that
because they are concerned about his kidneys. He was getting a lot more swelled last night before we headed to the sleep room because
his kidneys weren't getting the fluid off as good as they should. The nurse told us his blood levels from the antirejection meds were high
and they were holding his night dose (he gets it at 6am and 6pm). In the mornings they draw labs to see the level and that determines the
night dose. Last night it was too high so they held his night dose. They said that med is hard on the kidneys and that is why they weren't
working as good. They were going to give him some Lasix to try to help get the fluid off his body.
--Me and Robin headed on to bed around 10pm. At 3:30am we got a call in the room. He told me that Levi was in more respiratory distress
because his lungs had started filling up with fluid. They had talked to Dr. Alonso(surgeon) and she felt he needed to be put back on the
ventilator. They are also holding his doses of the antirejection med until that level comes down. Hopefulley that will give his kidneys a
break and then they will get rid of some of that extra fluid off his body. He said they were getting stuff ready to intubate him at that time.
-I tried to go back to sleep, but it was hard. I just kept worrying. I think I did fall asleep after about an hour. Then I woke again at quarter til 6.
I finally drifted off again and the alarm I set woke me up at 7. I wanted to see him so I got on up and headed over here to see how things
were and update real quick.
--When I got here the nurses were giving report outside his door and I asked how he was doing. She said they had to intubate (breathing
tube) him and they also had to give him some blood pressure meds to get his blood pressure down. The blood pressure is another side
effect of the antirejection meds. He will have to be on BP meds a lot.
--The surgeon was in the room when I came in and she was listening to him. She said she could hear breath sounds on that side now.
And told him "it's hard to breath with one lung, huh, buddy?"
--She told me it was not an unexpected thing to happen. He got off the breathing tube earlier than most do. So it wasn't surprising that he
had to go back on it. That made me feel a little better. She told me that the breathing tube would help the lung expand.
--So now I am not so worried. I'll probably nap all day. I'll let you all know if anything changes. They haven't rounded yet, so I'm sure we will
find out more then.
--I'm gonna go wake Robin up, he wanted to sleep a little longer while I updated. I told him I would come update then we could go down
and get some breakfast. I feel better about Levi and I'm going to go get something to eat.
--Until later,
Laurie
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MONDAY, MARCH 10, 2008 05:36 PM, EDT
Well, not much has changed since this morning. His kidneys seem to be working better. They have also given him some lasix to help with
the fluid build up so he is putting out urine better today.
He seems to be resting much better today. They changed around his pain medicine and sedation this morning. The nurse said they were
having to give him pain medicine every half hour. So today they have him on some sort of drip and he has been resting peacefully all day. I
am glad. He was so pitiful yesterday. He would look at me with those big baby blues and just cry. He just don't understand why he's hurting
so bad. So I am glad he's rested today. I haven't heard him cry once.
One of the doctors came by today and said they plan on starting the scopes and biopsies on Wednesday. And they will do them 2 x a week
This is to watch for infection and rejection. He said they do it in the room and it doen't hurt they don't have to give them and pain medication
for it. They just go in and look at the bowel and take tiny bites to check for rejection and infection.
I guess that's all for now. Love ya all!!
--Laurie
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TUESDAY, MARCH 11, 2008 09:43 AM, EDT
Things are better today. They took out the other JP drain this morning. They had to up his sedation a little. He doesn't wake up, but he gets
real squirmy. They also are going to adjust his ventilator settings a little to work on getting him able to be off of it in a day or so. They plan
on doing the other surgery on Thursday if all goes well. That is, if they get most of this excess fluid off of him and his lungs are getting
better. They will do the surgery before they take him off the vent.
--So that is all I know right now. Probably won't change too much today. Robin has headed home today. To spend some time with the boys
and pick up a few things. He only packed things for a few days stay, not a few months. so pray he has a safe trip home and back up here
tonight.
--Laurie
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TUESDAY, MARCH 11, 2008 04:22 PM, EDT
The surgeon just came by and she said he is on the schedule for his surgery on Thursday... As long as the swelling has gone down. If the
swelling is down it will be easier to pull the muscle layer together.
--Also the ICU attending doc stopped in and said his xray of his chest showed his lungs and they looked good. No more collapse. YEA!
Laurie
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WEDNESDAY, MARCH 12, 2008 11:14 AM, EDT
Nothing much has changed today. They did a scope this morning and took biopsies. Dr. K said everything looked good. They will do the
scopes 2 x a week for about 8 weeks. The endoscopy nurse said we would be seeing a lot of her.
--They also increased his diuretic (to make him pee more) to get more of the excess fluid off before surgery tomorrow.
--That's all today.
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WEDNESDAY, MARCH 12, 2008 08:30 PM, EDT
Nothing much new, I just wanted to let you know that his surgery is scheduled for 830 in the morning(THURS). I'll let you know how it goes
later tomorrow.
--Laurie
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THURSDAY, MARCH 13, 2008 10:55 AM, CDT
Surgery went well. They came and got him around 830 and he was out by 10. He's closed up now. The surgeon said everything looked
good in there. They did a biopsy of the liver before they closed him up because that would be their last chance to see it. She also said his
lver numbers can change after surgery and they wanted to know where things stood beforehand so they would have something to
compare it to. And they would have a better idea if the liver numbers were from surgery or some other reason. That's all I have to update for
now. I just can't believe how good his color is!
--Our preacher, Charles got here right before the surgery and has just now left so wish him a safe trip home.
--Laurie
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FRIDAY, MARCH 14, 2008 05:24 PM, EDT
Not much new today. They were going to try to extubate him today, but he had an xray this morning and said his lungs looked a little "hazy".
So they adjusted the pressure to expand his lungs more. They said his respirations were good, they just wanted to expand them a little.
Don't want another episode of extubating him and then have to put it back again. I'm all for that. I want him to get off and stay off. So they
said they will probably try to get him off tomorrow. Maybe we'll get to see a glimpse of the old Levi again. It's been a week, I'm missing his
smile something awful.
--I miss my other boys too. It's been rough. Robin is leaving me tomorrow. He has to be at work in the morning. He is off Mon and Tues, but
is going to do some stuff around home. And his next day off won't be until next weekend. That's how long it'll be before he will be back. I am
sure the boys will enjoy having daddy at home. It's gonna be this way for a while, we just have to get used to it and know that it will be back
to normal sooner or later.
--Love you all, Laurie
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SATURDAY, MARCH 15, 2008 10:27 AM, EDT
They still don't think he's quite ready to extubate today. Close, but not quite. They said maybe tomorrow. They are really being extra cautious
and making sure that he will be able to get off and stay off this time. I would much rather him stay on it than for them to extubate him and
then the next day have to be intubated again. That would just be harder on him than just leaving it in another day or two.
--They changed around his sedation a little yesterday and I think it is working a little better. They aren't having to give him as much. And
once the breathing tube is out, we won't have to worry about keeping him sedated. I can't wait to see those baby blues again. (well at least
baby blues that aren't high as a kite)
His swelling is almost completely gone. His color is great. It is amazing!
He's getting some blood today. The said his hemoglobulin was low, but was probaby because of them. They have been drawing lots of
labs. So nothing serious.
That's all I can think of for now. Oh, I just wanted to let you all know (FYI). I am working on another page for Levi. For those of you that don't
already use this address it is www.levishawn.com. We bought the domain name shortly after starting the caring bridge and right now it is
just set up to link it to this page. (ie. if you type in that address in your browser, it will just bring you here.) I think most of you know this
already. We did it because we thought it would be a lot easier than typing the whole caringbridge address. So I am working on fixing that
site as one by itself. It will probably be awhile because it entails a lot of work, but I think it will be much better than this one. Such as, this
site only lets me upload 12 pictures. My site will have as many as I want. Also I can set up different pages on my website for Levi's
brothers, family, pets, Levi's grandpa, you name it and I can have a separate page for it. I can upload video or whatever. I also want to use it
to educate people about organ donation and what a wonderful gift it is. And also educate people about what caused Levi to need a
transplant. And all the problems that come along with it. I want to be a source of information for someone else that is going to be going
down the same path. It was a while before I found the support group on yahoo and until I did, I felt so lost. Those people helped me
understand a lot. I just want to be able to do that for someone else. So once I get it up and running, I will let you all know. It will be a good
thing.
--Until later, Love you all, Laurie
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SUNDAY, MARCH 16, 2008 10:08 AM, EDT
Baby boy had a rough day yesterday. Around noon his tacro levels (I am sure you will be hearing this word a lot from now on. it is the
rejection medicine) got a little high again. His heart rate went up, he wasn't peeing good again, he started swelling again because he
wasn't peeing. So they were waiting to see how he did throughout the day to decide if he could be extubated today. They have to start
another sedation medicine that is easier to wake up from before they extubate him and they weren't sure how he would do the rest of the
day. So NO extubation today. BUT the good news is, later in the evening as the day progressed, he started peeing alot more and the
swelling started coming down again. It was all related to the tacro levels. He starts having those problems when the levels get too high.
They are holding the dose again and it seems to be helping. They think he should be ready to extubate tomorrow.
--I had to sign a consent for the other sedation medication that they will use. (It apparently has more risks than what he is on, but think it is
best to use it than trying to go cold turkey wit hthe meds he is on now because it will take much longer for him to wake up) He is on 3
different sedation meds right now. This new one will replace all three. The doc said it is easier for them to wake up quicker than on the
other 3. They will start that medicine (propofol) at midnight and will only run it for 12 hours---time to get the other sedation medicine out of
his system. They don't like to run it longer than that because it isn't safe. Then when he starts to wake up tomorrow, they will take the
breathing tube out. So hopefully if all goes well, he will be off the ventilator sometime after noon tomorrow.
--That's all I have for now.
**HUGS** Laurie
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MONDAY, MARCH 17, 2008 09:43 AM, EDT
Today is supposed to be the day. They are planning on getting the tube out around noon. The respiratory tech said he still may have to be
on oxygen for a while after they extubate him, but we would just have to wait to see how he does. He did ok overnight with the other
sedation. They started him on a medicine about 9am to help with withdrawls from the other sedation medicine he was on, the
morphine,etc. I guess he would have withdrawls after being on it for a week. Hopefully he won't have it too bad. We will just have to wait
and see what the day brings.
--He looks good this morning. If he gets woke up good enough I will try to get some pictures and post them later and put another update
on how he is doing.
Laurie
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MONDAY, MARCH 17, 2008 01:15 PM, EDT
They extubated him a little sooner than they were planning.Around 10. He started waking up and they said he must be ready to get that
thing out.
--He is having some pretty bad withdrawls, though. He still isn't AWAKE awake. His eyes will open, but he has the "nobody's home" look. I
am sure it might take a few days to get all this out of his system. They have been giving him adavan and methadone (yeah the one they
use to get druggies of pain medicine) to help with the with the withdrawls.
Also he isn't peeing very good again so they are watching that too. It is probably from the rejection meds...Again. They gave him his dose
last night and I guess he had one this morning.
So soon as he is AWAKE awake, I'll get some pics to you guys. I'll probably post one on here and also send it to you all in an email.
--Take care.. Laurie
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MONDAY, MARCH 17, 2008 08:07 PM, EDT
I don't have a lot to update right now. I had just taken a couple of pics of him while he was awake and wanted to post them tonight. He's
coming around, but still not quite there. He knows we are here though. He will follow us with his eyes. Now he is just acting like he don't
feel good. And that's totally understandable.
--They put him on a high flow of oxygen to see how he does. With the withdrawls, he gets to breathing fast. So they put him on a high flow
because it pushes the air in better. The high flow is not necessarily because he needs that much oxygen, but to help him breathe easier.
He's having a little tough time with the withdrawls, but they are giving him medicine to help. And it seems to be working pretty good.
They said at evening rounds that as long as he is able to keep the breathing tube out they will probably take out the artery line out(in his
wrist), one of the central lines(in his collar) and maybe the catheter. So tomorrow will be a day of getting more stuff gone. That is if all goes
well with him breathing on his own.
--He is peeing a little better now. The nurse said he was a little "dry", I guess meaning a little dehydrated, and that was probably the
reason. And it has picked up more throughout the day. So hopefully it wasn't from the rejection meds this time.
--He has thrown up a few times today after they give him meds. That's nothing new for him though. He never has been able to keep much
volume down. Especially a lot at one time. There could be other reasons too though. They gave him some nausea medicine and hopefully
that will help. They said the withdrawls can cause nausea.
--They did the scope first thing this morning. I am not sure if I said that or not in an earlier update or not. Everything looked good. He will
have the next one on Thursday.
I think that's all. I promise, no more updates tonight. I think I've written 3 today. I'll email that picture to you all here shortly. I also put another
one on the picture page of a picture I drew of him. Hope you like it.
--Later, Laurie
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TUESDAY, MARCH 18, 2008 07:47 AM, EDT
Little man had another rough night. He had been breathing fast all evening yesterday and it didn't improve overnight. So first thing this
morning, they decided to intubate him again. They said where he was working so hard and breathing so fast, he would eventually tire out
and stop breathing. So they wanted to do it under controlled circumstances instead of emergency ones. As far as his numbers, they
looked good, they just weren't happy with him breathing so fast and his heart rate fast. He was breathing anywhere from75-100 breaths
per minute. That is over 1 breath per second. You try breathing that fast and see how tired you get. I was feeling so sorry for him. He looked
so uncomfortable, but he is resting really good now. I don't think he slept much at all last night, so I am glad he is resting now.
He started to run a FEVER through the night. They started him on antibiotics and did cultures and stuff, but we will have to wait to see what
grows.
--I told you it was a rough nite.
--So we had another setback, but we know that there will be many. The surgeon told me this morning it is a marathon and there are gonna
be some bumps along the way, we just have to pace ourself.
I'll let you know if anything changes. The cultures will be at least around 12 hours before they get a preliminary and they drew them around
1 am.
I'm gonna try to get some rest. Now that he is intubated and sedated again, it will be easier to sleep. They were anticipating it all night and
finally decided that he needed help.
--NITE--or well, morning, Laurie
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TUESDAY, MARCH 18, 2008 06:30 PM, CDT
Levi has done so much better today. They have him sedated, but not as much as before. He has been awake and looking around. So
sweet. You can tell he feels a lot better. The fever only got to 100.4 so hopefully it was nothing to serious to worry about. Dr Kocoshis thinks
it could even had to do with the respiration problems he was having. That would be better than rejection or an infection. Speaking of
infection, the cultures haven't grown anything the last I heard. YEA!
--He is so beautiful. It is so much easier on me when he rests comfortable. And it has been nice to talk to him and he seems to know and
listen to what I am saying. They aren't giving him more sedation to keep him knocked out because he seem content even when he is
awake. Just enough to keep him comfortable. He's not having the withdrawl symptoms like yesterday either. Today has been a lot easier
on him I am sure.
--His breaths per minute went from 75-100 yesterday and last night to 20s-40s after they put him back on the vent. They said his volumes
are looking better too.
--They also started him on small feeds today. Only 1ml (cc) an hour. So barely anything, but they start slow and that's ok with me. They use
a different kind of formula than the one he was on. It is only half strength and really easy on these little fellas. So we'll see how he does
with it.
--The nurse said his labs are looking good. I am pleased. Hugs and kisses to you all.
Brandon wrote a poem about Levi. I have it hanging above Levi's bed. It is hand written and so sweet. If you like it, send him an email. He
would really like it. Brandonhgoff@aol.com
--I added it to the welcome page photo.
--And I would appreciate you sending him some love.
--Laurie
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WEDNESDAY, MARCH 19, 2008 09:00 AM, EDT
Levi had a much better night last night. YEA! His numbers are looking good and they are starting to wean him off the ventilator. They hope
to get him off around Friday. The doctor that put the breathing tube back in yesterday saw some swelling in his epiglottis (back of the throat
flap). Probably caused from the previous intubation. They have him on some steroids to help get the swelling down.
--They did an RSV (respiratory virus like he had in Jan) test last night. They said he was having a lot of secretions. The results aren't back
yet, but I don't think he has it and I don't think they do either. Nevertheless, the hospital policy is to put him in isolation until they get the
results back. So the nurse is watching that close, she said. That way she won't have to wear all that get-up.
--They also took the foley catheter out this morning. YEA! I bet he is glad for that. And they are increasing his feeds slowly 1ml (cc) every 12
hours to make sure he is tolerating it.
--All is well today. Thanks for all the thoughts and prayers.
--Love you guys, Laurie
--PS. If you like Brandon's poem that's next to Levi's welcome page photo, send him an email. Brandonhgoff@aol.com
I would really appreciate it and so would he. I'm not there to hug him for it, so maybe you words will make up for it.
--Also I am getting a new neice today!!! I think it is Madilyn Brooke (sorry, Beth, if I spelled it wrong--or get the name wrong)She will be
called Maddy(again, I may be spelling it wrong). So, I'll let you all know when she gets here. I miss not being there. I've missed 2 nephew's
births and now am missing my neice's. :( Oh well, I gotta be here with precious. And I'll see them soon enough.
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MARCH 18th 2008 7:44 p.m.
Welcome to the new site. Hope it's better than the caringbridge. I will be able to do so much more with it. It's still got a lot that I have to work
on, but the Journal is up and the photo links of the boys and me and Robin are up. Take some time to cruise around. Hope you like it.
--I got my new niece today. YEA! I can't wait to get a picture! Congrats Beth and Chad!!
--Laurie
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MARCH 20th 2008 11:45am
So how do you like the new site so far? It still has a few kinks and I still have a ton of stuff to add. But is is at least viewable now. The
journal pagesare ready, the donor links are operational, the photo pages of me and Robin and the boys are ready. If you have any
suggestions, please email me and let me know. You may find something that might make it easier to navigate. Like I just went and looked
and I didn't have a navigation bar on most pages. That will be fixed once I update. AND in case you didn't catch it before I fix it, I left out an s
in Levi's Story on the navigation bar. So please let me know if you find anything. I don't want it to look bad. Also I don't have a guestbook yet
so I am linking the caring bridge guestbook for now.
--Levi is doing very well today. He is still sedated, of course, but doing well. All the cultures have been negative so far and they have
stopped the antibiotics. The RSV test was negative so he is out of isolation. He had a scope this morning. All looked good. He saw some
formed stool, which, he said, was a good sign. His feeds are going at 3 ml (cc's) an hour and will be increased to 4 very shortly (around
noon). The plan is to get him off the breathing tube tomorrow. Please Pray the little guy can stay off this time.
--I will post a few days updates at a time on this page. That way if you miss a day or two, you won't have to go looking for it in the journal
archive. I think that is all for now. I have a lot to get working on. I am trying to fix a video slide show to play on the main page. And will (if I can
get the main one to work) for each of the photo links. Right now it links you to the video players site to watch, but I want it toplay on the site,
so I have some work to do.
Love you all,-Laurie
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MARCH 21st, 2008 11:25am
The breathing tube is out! AGAIN! They extubated him about 9am. We'll just have to wait and see how he does! To me, it seems he is
doing much better than last time. His breathing is a little fast, but nothing like the other day. He don't seem as uncomfortable as he was
before. He is sleeping now, but was awake before they took the tube out and for a while after. He still was a little dazed, but you could tell
he's coming around. They must have gotten a jump on the withdrawls or it hasn't kicked in yet because he doesn't seem to be having any
of the symptoms like he had on Monday. He is on high flow of oxygen to keep his O2 levels up. Also his hearbeat has been a little irregular
since the tube came out so they are getting an EKG in a few minutes. I'll let you know. They didn't seem TOO concerned, but are watching it.
--Me and Levi will be getting some important visitors tomorrow. BROTHERS are coming! They won't be able to come back because of him
being in ICU, but at least I will get to see them. I miss them so much! Robin is going to take them to the aquarium afterwards. So hopefully
they will have a good time. Also some of my family is coming too. So it should be a good day...as long as Levi behaves!
--New things on the site to see: Levi Goff Support Foundation, video of Levi on photos page at the bottom, and definitely watch the
slideshow on the main page. It has over 100 pictures, so be patient. I think you will enjoy it. It has music, but you have to click on it and then
click the speaker button to play it. The pictures will be playing automatically. There is also a slideshow on mine and Robin's photo page.
More will be added later.
--Love ya Laurie
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March 22nd, 2008 9:45am
Levi did excellent yesterday. He was even playing around a little. He would reach for toys when I would hold them in front of him. Still no
SMILE, but I'm working on getting it out of him. He did almost let out a little excited squeal when I was playing with him. He grabbed the toy
and tried to eat it! I am so glad he's coming around. He is breathing a little faster today, but they think it is probably related to the withdrawls
and not his respiratory condition. We'll see how he does today. He may just have to breathe fast for a while until he gets all the drugs out of
his system. They are helping him as much as they can. He is still on High Flow oxygen. To help keep his lungs pumped up.
--He got the big NG (nose to stomach) tube out yesterday. That is the same kind he had at home, but it was a lot bigger and they were
using it for suction. So that gave the little fella some extra room in his nose. He still has an NJ (tube from nose to the jejunum--part os the
intestine), It does the same thing the NG he had before and looks the same. He is getting his feeds (5ml/hr--will go to 6 at noon) through
the NJ. So he will probably have that one a while. He also has the G tube (goes straight to the stomach from his belly). He is getting his
medicine through that one right now. He will probably have it a while too. They are going to take out one of the central lines out today.
Everyday we are losing something. He is making progress. He will still have one central line, an arterial line and his PICC( the one he had
at home).
--The boys are on their way!!! Yea! I think I am gonna go to the aquarium with them since my family will be here to keep an eye on Levi. It
will be good to get out and have a good family day. I can't wait until Levi gets outta here and can do stuff like that with us. They should be
here around 1 or 2. It's gonna be a good day!
--Until later, Laurie
------------------------------------------------------------------------------------------------------------------
March 23rd, 2008 12:25pm
Better and better each day! Levi got rid of a central line and his arterial line yesterday. Today they are trying to wean him off the oxygen. He
is already way lower than he was yesterday. He is off the high flow and just on regular oxygen at 2 liters. He was on 8 liters with the high
flow yesterday..so that is good. He has pulled the oxygen off now and they are seeing how he does without anything.
--They did an ultrasound of his heart last night because the past couple of xrays were showing his heart slightly enlarged. The ultrasound
showed a little bit more than normal amount of fluid around the heart, but said as long as he is not acting worse, they are just going to be
watching it. If it gets worse (they don't think it will), they can take a needle and remove it.
--I was so glad to see the boys yesterday. We had a really good time at the aquarium. My sister went with us. We petted sharks and saw all
kinds of neat stuff. Toby really enjoyed it. He was looking in amazement and pointing at everything. My dad, brother, sister-in-law, and
nephew also visited. The took turns watching Levi while we were at the aquarium. It was really good to get outside and see people i hadn't
seen for a long time. Especially the boys!
--The nurse told me today the I may get to hold Levi a little later. I am beside myself! I can't wait. She said when she changes his bed, she
will let me. YEA!! She also put him some clothes on (well, a button up shirt). That will be as dressed up he gets this Easter. He got an
Easter basket last night with a book and a bunny. I told him that before we get out of here, we won't be able to find him for all the stuffed
animals. He is getting quite a collection! He got a transplant bear a couple of days ago. The bear is supposed to have had a transplant too
and is supposed to help the kids deal with theirs. I thought it was cute. I think I will even give him some stitches like Levi, so they will look
the same.
I think that's all. Hope you like the new pictures.
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March 24th, 2008 10:40am
Levi had a good day yesterday. The only thing was he was breathing fast. He is still doing that today so they have put him back on the high
flow oxygen hoping that will help him out. He was off of oxygen all day yesterday and did fine other than breathing fast. Hopefully he will
slow it down and start breathing normal again soon.
--I got to hold him yesterday!!! I was so happy. Tears welled up in my eyes. It was a tender moment. I held him for a couple of hours. He
stayed awake looking at me the whole time. We just watched Noggin (kids channel) and talked a little. Well, I talked a little.
--He has his scope and biopsies today. Everything looked good. The doc said unless he has microscopic rejection(that's what the
biopsies are for), he didn't see any signs of gross rejection (lesions, ulcers, etc). SO YEA!!!! He said his liver numbers were up a little
yesterday ( liver numbers can be a sign of rejection), but they were back down a little today. He said they would hold on doing a biopsy of
his liver for now, since the numbers came back down. He said it could also be from where they put all the organs in together, the bile ducts
get cut and sometimes they don't function properly so they give them Actigal (which he was on before because of the TPN liver cholestasis,
but the Actigal helps better now that he can absorb more of it with his new bowel!) So we will just have to wait and see what his liver
numbers do over the next couple of days. The doc said that as long as he can make it another week without significant signs of rejection,
then he will be doing good. I guess that is the time frame that most significant rejection occurs. Also he said he expects him to be down on
the regular floor in a couple of days (but he don't make that decision, the ICU team does)
--He is at 9ml/hr on his feeds now and will go up to 10 at noon. They are also decreasing his TPN a little.(I don't know if you all know he is
still on it[TPN]--- he will be until he is absorbing enough nutrition from the feeds)
That's all for now. Robin is on his way. We have to go to Lex to run a few errands. His aunt is coming with him to watch Levi while we are
gone. I will update later this evening if anything major happens, if not I'll chat with you all tomorrow.
---Laurie
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March 25th, 2008 10:30am
Levi's doing pretty good. Robin's aunt Connie was able to get a few smiles out of the little stinker yesterday. He is still yet to show me one. I
think he's mad at me. The last thing he remembers is being happy and in a good mood and when he woke up he felt like he was hit by a
Mac truck and I think he thinks I pushed him in front of it. Oh, well. He'll just have to get over it. I'm sure he'll come around eventually. He
was on High flow O2 all day yesterday and last night. He seems much better today. He isn't breathing near as fast and he isn't doing the
grunting he was doing along with it yesterday morning and over the weekend.
--The doc told me this morning that the biopsies showed a small amount of rejection. WAIT, don't start freaking out. 80% of kids have
some sort of rejection at least a couple of times. They put them on steroids for a few days and most rejection responds to that treatment.
His is NOT severe by any means. He has no ulcerations or anything. So calm down... This is ok. We expected at least some rejection. It's
nothing to hyperventilate about. So he will be on steroids a few days and they will do another biopsy on Thursday. The doc said this also
explains the liver number increase.
--PLEASE SIGN THE GUESTBOOK! I finally fixed a new guestbook for our new website. The link is at the top of this page in orange. There
is also a separate link to view all other entries into the guestbook by other people. Thanks to everyone that's signed already. I still may
tweak it a little. Love you all
----Laurie
Please take the time and check out this website. I've asked for your prayers for him before. He is very sick again and the family could use
any extra words of encouragement you could offer. I just can't imagine what that family is going through. Pray that God will be with them
and that their precious boy will be better soon.
--Laurie
----ANOTHER UPDATE TODAY! They said if his respirations are good today, we might get to go to the regular floor tomorrow. Out of ICU,
YEA!!!!
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March 26th, 2008 6:15pm
No news is good news. Nothing really new going on today. He is still breathing a little fast so we are still in ICU. They took him off high flow
again and put him back on regular oxygen. He's rested really good today. He has another scope with biopsies in the morning. Pray they
look better. I guess that's all for today. TPN is at 12.7 ml/hr and feeds are at 16ml/hr. They are increasing the feeds by 1 ml every 8 hours
now instead of every 12 and decreasing the TPN. Maybe we will be rid of the TPN all together before long. All is good.
---Laurie
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March 27th, 2008 2:05pm
We made it out of ICU!! That's why my update is a little later today. We just got down here a couple of hours ago and we had to get settled
in. He is still on oxygen. He is still breathing fast, but they are comfortable with it. They are trying to wean him off, but it may take some time.
He had his scope and biopsies this morning. The scope looked good. The rejection hadn't gotten worse. That's a good thing. But we will
have to wait on the biopsy results to see if he needs more steroids. The results should be back later today. I may update again later if
something changes.
--I am so glad to be out of ICU. Now I can actually eat and drink in the room. (We weren't allowed to in the other room) I can order room
service here and they will bring it up. That's a nice service they have here. You have to buy the meal tickets for that downstairs though, They
are $5 each and you get an entree, 2 sides, a dessert and a drink. Not too bad, you can't hardly get that downstairs for that price. You call
their # and give them your ticket # and your order and then they bring it up in about 45 min. We also have a shower in the room down here.
Upstairs you had to go down the hall. So we will be much cozier down here, I think. I put our name on the list at Ronald Mcdonald House
today. It will be a few days before I hear anything. It will be a better place to stay when Robin is here with me.
--His feeds are at 18ml/hr and his TPN is down to 10.7ml/hr. We're making progress. His feeds at home never made it past 14. He's
making car noises now. How cute! I haven't heard that for weeks. He's also smiling more and laughing a little more each day.
Talk to you all later. Love you guys!!
If you wanna call, I have free long distance and roaming now, but it's a new cell phone #. You can call anytime you like. 606-219-7826. Also
the room # is now 513-636-9507. If you have my old cell #, get rid of it. I won't have that anymore.
----Laurie
--Oh, check out Devin's page. Prayers have helped him. He's improving, but still not out of the woods. Say another prayer for him
---4:30pm Biopsies look GREAT!!
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March 28th 2008 11:30am
3 WEEKS POST-TRANSPLANT TODAY!!!
All is well in the land of Levi. Morning rounds are later here on the regular floor. They don't start until 10:30am. In ICU they start at 7:30am.
So my updates may be a little later. Probably around this time to noon. He is still breathing fast, but is happy and content. They are just
watching him. If he becomes irratible or uncomfortable because of the breathing, then they will get concerned. They took him completely off
the oxygen this morning to see how he does. He goes back and forth on and off. They said he may breathe fast for a while. They
---His feeds are at 21 ml/hr (WOW!) Since he is handling them so well, they are going to start increasing them every 4 hours instead of
every 8. (Whoohoo!) They said he should be completely off of the TPN by tomorrow. (WHAT?! Did my ears deceive me? No more TPN?!!!
Unbelieveable!) Their goal of feeds is 30 ml/hr (30 ml = 1 oz). Once he gets there and is off the TPN, they are going to increase the
concentration of the formula he is on. It is at 1/2 strength now and they are going to up it to 3/4 strength. He is doing so good.
---He has been so happy. Me and him have been playing. He's been laughing and pulling my hair. He's back to his old self again. Life is
good!
---In case you didn't see my updated update yesterday: His biopsies from yesterday looked great!
-Love you all, Laurie
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March 29th, 2008 10:15am
Levi threw up a couple of times last night and once this morning when the nurse was giving him his meds. His output fom the ostomy has
been a dark color since yesterday evening. They don't seem too worried and think the dark color is from the biopsies Thursday. They are
watching it for now. The volume coming out hasn't increased, just the color changed. They are pleased to see that he is having "chunks"
come out into the ostomy bag. (it's not called a colostomy, so don't think I am misspelling it. It is called an ostomy--simply an opening in
the abdomen, or an ileostomy--because that is the part of the intestine that comes out--the ileum: Just thought i would clarify that for you
all. And he actually has 2 openings right next to each other) The docs said they are impressed on how well he is tolerating the feeds
increase. They said they aren't normally able to increase them as fast. He is at 27 ml/hr now (goal 30 ml/hr)
--He probably won't be off the TPN today. His input/output isn't where they want it. (How much is going in compared to how much is going
out) He is positive which is good, but they would like the positive number to be higher. His is about the same. He has just about as much
coming out as going in.(At least he is not negative--that would mean dehydration) So they didn't want to cut off the TPN because it is a little
extra fluid that they would be taking him off of. He is only at 2.7 ml/hr. So it's not much. They are just going to hold it at that for a while.
--His blood pressure has been runnning a little high for the past day or so. They are going to put him on a BP med today to help with that.
Remember, I said the rejection meds can cause that. This will probably be an issue from now on.
--I got a room at the Ronald McDonald House yesterday. It was nice. The whole facility has a "homey" feel. I slept there last night. It was a
little lonely by myself. I'm not used to that much privacy. It will be much better when Robin will be with me. There are no TVs in the room.
When I went in last night, it was like--This is TOO quiet. I'm not used to completely quiet. I need some noise! But the bed was sooooo
much more comfortable.
--That's about it for now. Over all, they are very happy with his progress and not too concerned about the minor issues. That is good news!
Thanks for all the prayers. You know we love you.
--Laurie
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March 30th, 2008 10:50am
Not much new today. They are still watching his breathing, but it has stayed about the same. It hasn't really gotten any worse. His lungs
still sound clear so they are just keeping their eye on that. He is off of the oxygen completely, I don't know if I told you. They took him off the
day before yesterday, I think.
--They are changing the concentration of his feeds to 3/4 strength to help him get more calories and hopefully gain weight. His TPN is still
at 2.7 ml/hr and they didn't say anything about completely cutting that off yet. His feeds are at 30 ml/hr! He has already reached the goal
they set for him. I am so proud he's doing so well.
--He had to get some blood yesterday. No biggie. It wasn't critically low. Probably from all the lab work they do. So he got refueled.
--That's about all for now. Robin is heading up tonight with the boys after he gets off from work. I will get to spend the day with them at the
Ronald McDonald House and Robin is going to stay over here with Levi. I will be so glad to see them. I miss them so bad and I know they
miss me. They are all dealing with it in their own way, but nevertheless, it has been really hard on all 3 of them. They always ask when I am
coming home. How do you answer that, when you don't know the answer yourself? I just tell them that we just have to make it through it
and then we will be back together soon. I tell them to just keep praying that Levi gets better as quick as he can. When it's over, it won't
seem like it has been such a long time and we will be all the more thankful for the times we are together.
--Love you all! Laurie
--Another update today. 4pm.The biopsy did show signs of rejection again. He will be on the stronger dose of steroids for 3 days and then
back to the normal dose if his biopsy Thursday is improved. they didn't say if this would delay discharge or not. This explains the liver
numbers as well.
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March 31st, 2008 3:00pm
I have been at the Ronald McDonald House all day with the boys. They are having a really good time playing in the play rooms and stuff.
Robin has been with Levi. His scope from this morning looked good. His liver numbers have been going up a little over the last few days
so we will have to see what the biopsies look like. They think the liver numbers might just be because the donor was so small and it is
trying to work harder for a bigger baby.They have taken him completely off the TPN and lipids. Tomorrow they are going to change his
formula to what he was on at home. They are going to do some sort of test to see if they can find the reason behind his breathing fast.
They are also going to remove his other central line. Then he will be just left with the PICC that he came with, the G-tube and the ileostomy.
i haven't heard when they will be removing the staples, but I would think pretty soon.
--I have been emptying his ostomy bag. They showed me how yesterday and I feel pretty comfortable with it. They also showed me how to
change the bag, but I haven't done that myself.
--They told Robin they will be starting to work with us on training us on all his new stuff because they want to discharge him
Thursday.(Probably to just the Ronald McDonald House, but still! Can you believe it?) We have to do a transitional period where we will
provide ALL his care in the hospital before we leave for 24 hours. That's just to make sure we are comfortable with everything while we are
around nurses and doctors. I know how fast things can change so I don't think Thursday is set in stone. We will just have to see what
happens the next day or 2.
--This is what happens with 1 day of Robin sitting with him. All this stuff starts happening. I should let him stay with Levi more often.
He is such a happy baby and doing so well. Knock on wood
Until later. Love you all. I love the power of prayer.
Laurie
Before I update I want to ask all that are able to go and donate blood. You don't have to do it in Levi's name, but the blood bank around here
has a really bad shortage. I think they really need O, but I am sure they would be happy to get any they can. You are saving a life when you
do it. Don't put it off, just go and do it. Levi's life has been saved many many times thanks to the compassion of blood donors!!!
--Well, Levi got gassed up on blood yesterday. He should be good for another month or so. We were at UK from about 12:00pm to 9:00pm
for 3 hours worth of blood. First, they didn't start it until 3 because they had to wait until they got ahold of the doctor and get orders and they
also had to type and cross him again and we had to wait for the blood to come. He started getting the blood at about 3 and at around 5
(they were checking his blood sugar every hour) it dropped to around 45 I think. It started at 61. So they had to stop the blood for a while
and give him some dextrose(sugar) to bring his blood sugar back up. (He had to be unhooked from his TPN which has a HIGH amount of
sugar. Blood isn't compatible with anything. So when it is stopped abruptly then his sugar starts to bottom out.) While they were giving him
the dextrose, they tried to start another IV so he could be getting the TPN at the same time and we wouldn't have to watch his sugar so
close, but after 2 attempts and lots of looking, that didn't work. So they finished out his blood, about another hour and hooked him back up
to his TPN. They wanted us to stay about an hour afterwards to make sure his sugar was where it needed to be. So it was right at 9 pm
when we left. I knew we would be there a while, but didn't expect it to be that long. I thought maybe 6 at the latest. I'll know better next time.
Other than the sugar issue he did really good.
--He got to visit some of his old friends and he saw Dr. Shashidhar, who he hadn't seen since November. The nurses were really nice and
all the ones that has had him before came by to say hi. They said he was getting so big! I guess he has grown a bit since they saw him
last. We hadn't been up there since the first of the year when he had RSV.
I haven't heard anything about the results of the ultrasound he had Thursday or about his new score. I figure they will probably call Monday.
--Take care.
Love ya!
Laurie
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WEDNESDAY, MARCH 05, 2008 09:22 PM, EST
Lots going on today so get comfortable...
--First, we are in Cincinnati. No, it wasn't a fever this time. Something new, something different. Last night about 2 am he threw up a little
bit of blood. It was about 2-3 tbs. It was a brownish color and was mixed with his formula. More blood than formula though. Earlier that
morning I thought I had seen a tiny bit of blood in his diaper, but wasn't sure it was blood until he threw some up. So we called UK, since
the docs there know us really well to see what they wanted us to do. She told us to take him to the ER there at home and she would call
Cincy to see what they wanted to do. I got to the ER around 2:30am and they drew some blood. (The ER doc he saw was the same doc he
had the night this all happened to him when he was 2 weeks old--so it was nice to see him again, but not under the circumstances.) We
waited there until they arranged transport, but didn't leave until about 6:30 am. You know how ER visits are. We got to Cincy about 9:30am.
Since he didn't have a room yet, he was taken to the ER here. We saw ER docs and the GI fellows also came to see him. We didn't get our
room until about 4:30 pm today.
--He has only thrown up a couple times since the 2 am incident and it was not near as much blood. They said it could be irritation from his
NG tube, but they want to do a scope tomorrow because there is no way to know for sure what it is without actually looking at it. They said it
could be varices on the esophagus bleeding.(ESOPHAGEAL VARICES --there is a link to explain what that is) it is basically varicose veins
on the esophagus. He is scheduled for a scope as an add-on tomorrow so we aren't sure what time it will be. Also his bloodwork showed
his platelets are on the low side. Not so low that it is below the normal number, but they said since they are low and he is having bleeding
it isn't helping matters any. His hemoglobin is down a little, but it don't surprise me even though he just had a transfusion Friday because
they have been drawing a lot of blood. They are doing more labs tomorrow and they said they will decide from there if he may need
platelets or red blood cells or both.
--Also, his bilirubin has gone up again. It is now 20. something. No, they haven't called about his updated score from last week and I hope
they will try to adjust it again based on his bili level this week.
--So they are just watching him right now. They said if we lived closer they would've felt comfortable sending us home, but since we are so
far away they thought it to be best to keep him in case something happens. If we went home, we would have to drive all the way back.
That's the plan for now. It will probably change tomorrow after the labs are done. I'm not sure how long we will be here. They are just giving
it until tomorrow's labs and going from there.
--On a lighter note, Levi did have his visit from the person from FIRST STEPS yesterday afternoon. They aren't as concerned about his
motor skills right now as they are his sensory (eating). She is recommending him for occupational therapy to help him with eating.
Hopefully we can start getting him to eat a little. She said from there then they would consider physical therapy. She said he was very smart
and developing very well cognitively. So it was pleasing to finally have him assessed and know that they can help him.
--I think that is all for now. Oh, his PICC site is looking much better. It is healing up really well. We are using a dressing called covaderm. It
seems to be doing ok so far. He has such sensitive skin and it doesn't take much for him to develop a sensitivity to anything.
--Take care. I'll update as soon as I know anything different. Keep him in your prayers.
THE ROOM NUMBER IS 513-636-9509 so we aren't roaming on our cell phone if you call.
---Laurie
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THURSDAY, MARCH 06, 2008 11:08 AM, EST
I have a little to update. They just rounded so we know a lttle more of the plan. His bloodwork hadn't changed much since yesterday which
is good. They would expect his hemoglobin to go down if he was actively bleeding. But it has stayed the same. Also, he hasn't thrown up
anymore blood nor has any come out the other end. It has been normal poop color(for him). He is supposed to go down for the scope at
11:30 or 12. They said as long as the scope was ok, we could go home. Then the debate over whether or not he needs blood began. The
attending said he didn't think he needed any. That his blood was at an ok level. He seemed to have the say-so, but Dr. Kocoshis' nurse
was also there and spoke up. She said Dr. K would want him to be transfused instead of waiting until his next labs (next week) and getting
it then. Obviously there is a difference of opinion, but our Doc gets the say-so. So he is getting blood after the scope. No platelets though,
they said they are chronically staying low and they didn't want to expose him to anymore blood products than they had to and the low count
isn't causing him any problems.
--Hopefully the reason for the bleeding is just irritation from the NG tube.
--Also after the docs left from rounds, his nurse from clinic stayed to talk to us. I asked her if she knew his updated score and she went
and found out for us. It is 52. Robin asked how high that score can go because we had looked on the net and hadn't gotten a definite
answer. She said she wasn't sure. I don't think there is a definite cut-off. She said once it gets so high they start having bleeding issues
and start getting transfused more often. Once they get to a point that they are transfused once a week and they put them in ICU, that puts
them at a STATUS 1B. And that is the absolute highest. She said that they may not need to be in ICU for the blood, but they sometimes put
them there to satisfy the criteria of being a STATUS 1B and that helps their place on the list. So as long as he is needing blood once a
week they may put him in ICU to keep him as a STATUS 1B. That day may be coming. He is needing it more and more frequently. He's
been going about a month. I don't think this time counts because they have taken out as much as they put in Friday and that has caused it
to go down again. I think it's once that he is needing it on a regular basis once a week. She said they will be updating his score again next
Friday.
--Also I noticed at rounds that I thought they said his Bilirubin was 13 something, so what I heard yesterday at Somerset may have been a
different bili number. It may have been the total or something. Cause they didn't say anything about it being higher and I would think that
they would address that. So if it was 13 then it has came down instead of going up. I will have to get that clarified.
---As far as going home. I think we will probably have to stay another night because once everything is finished today it will be late. As long
as the scope is ok, we will probably leave in the morning. Talk to you all later. Thanks for the prayers. Keep 'em comin'.
--Laurie :)
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THURSDAY, MARCH 06, 2008 08:35 PM, EST
Another update today...
--He had his scope. He did really well. His esophagus looked really good. There were no varices---the thing they were worried about most.
So that was good news. Also they found a few ulcers on what's left of his small intestine just past his stomach and his stomach was a
little red and inflamed. So they said they would switch around his antacid a little to help with that. Also they did biopsy the places they saw
and because of that they decided to give him the platelets (plasma). Once he got that they started the red blood cells. They had trouble with
the glucose yet again, but got it under control. Then about 6:15pm one of the docs came in and said that
--THEY FOUND AND ACCEPTED ORGANS FOR LEVI!!!!
YEA!!YEA!!!YEA!!!
--I looked at this man I met just yesterday and I still haven't caught his name and started bawling and said "Thank you" and gave him a big
hug!!! I was in disbelief. I cannot tell you how good it feels. It is like an adrenaline rush like I've never experienced. They should bottle those
endorphines... people would really become addicted. So they sent out the crew to harvest the organs. We are just waiting now and they are
doing tests and stuff to get ready. They said it would be later on tonight sometime, but don't know exactly what time.
---Our prayers, your prayers, everyone's prayers have been answered. Thank the Lord God tonight. Keep Levi in your thoughts tonight as
this will be a long and delicate surgery. They said 6-10 hours or maybe longer.
--I will update as I can. I have the laptop and I think there is access in the waiting room.
Also on a funny note....
A few minutes after we were told and I was crying. The nurses were putting his NG tube back in because it had been taken out after the
scope. Well, the Child life specialist(they bring toys and books for the patients and movies and cards for parents to keep them occupied)
came in. She saw me crying and i looked at her and hugged her (I was hugging everyone). Anyway she starts saying. Oh it'll be ok. Once
they get it down it's in. He'll be ok. I started laughing. I said, "I'm not crying about the NG tube. It's a happy cry. He is getting his organs!!"
She looked like she felt stupid. I got a good laugh.
Keep prayin' I'll update more later.
--I love you all. Thank you so much. Keep the family that lost their precious one. Say a prayer for that family. In their time of loss, they
unselfishly gave the greatest gift of all. I will be forever in debt to them.
Laurie
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FRIDAY, MARCH 07, 2008 09:18 AM, EST
Yea,Yea,Yea!!!!
It's been a rough nite. I know I said I'd update through the night, but the room we were in didn't have internet access. Just outside that room
is access, but I didn't feel like running in here every hour. So, I will give you a timeline of what has happened throughout the night. I know
you all are dying to know. Also I will give you all a new phone number where to reach us when he is out of surgery and in ICU. i am just
calling a few people and letting it spread by word of mouth and I will update again once we are settled in the room.
--From the time we found out until they took him back, they did lots of tests. They did an xray, EKG, lots of blood work, and catheterized him
to get a urine sample. We were told that the surgery was scheduled around 1 or 1:30 am, but he didn't actually head to the OR until about
3am. He slept most of the evening and through the night, but woke up right before they came to get us. He was bright eyed and in a good
mood. He had the hiccups. We were in the holding room with him for just a little while and they took him to the OR at about 3:30am. They
were fighting over who got to carry him back. The surgeon said she never got to carry the babies so they let her carry him back. He was
grabbing at her mask as they walked back through the door.
430am update: getting more IV lines started. He was looking around at everyone grabbing at things and they put the mask on him and he
went to sleep easily. And they had put the breathing tube in.
515am update: Made first incision
621am update: Working on getting old organs out. Had taken spleen out( to make room--he won't have a spleen) Things going ok. Vital
signs stable.
730 update: still working on getting organs out. Started getting blood products. Vital signs still ok.
820 update: Organs just getting here. They had slowed down the process. They were ready for the organs. They preparing to take the liver
out. This would be the longest process--taking the liver out. Actual transplant itself will be quick because they work fast. They were just
waiting on the organs. He is just hanging out.
9am update: Now they are working on the new organs. I asked the coordinator (updater) if she might have an idea of how much longer
and she said she guessed it wouldn't be done before 12pm. So.. hopefully not much longer.
--So he is in the most critical point now. Please keep praying he does well. I will update as soon as I can. I love you all and thank you so
much for all the love and support you have given me and my family and especially that precious little angel back there. God bless you all. i
wish I could hug you all. So **CYBER HUGS**!!
--Laurie
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FRIDAY, MARCH 07, 2008 04:15 PM, EST
Ok, I know this is the update you all been waiting for. Levi is out of surgery and in ICU now. He looks good-- better than I expected. I
expected him to be really puffy and he really isn't. He opened his eyes just right after we walked into the room. They weren't open long, but I
know he knows we are here. They have him on a lot of sedation and pain meds, and will be for a while.
--Here's the timeline from when I left off through now:
1030am update: getting ready to put in new liver and connect vessels.
1130 update: bowel and liver in and doing good. When the clamps on the blood vessels were released, the blood flowed in and the bowel
pinkened back up just like expected. Now making stomas(an opening through the abdomen). And making a G tube that will go to his
stomach.
1pm update: HE'S FINISHED!! He did good. Surgeons and everyone came out to explain things. 1st they said when they opened him up
they removed his spleen. It was HUGE. They also removed 1/2 of his colon. Both of which made room for the new organs. The donor was
smaller than Levi, so everything fit pretty good. The donor was only 4 weeks old. (Please say a prayer for that family today) They did close
his belly, but only the skin layer. They left the muscle layer open and will do a second surgery in about a week to close that layer. They will
also do the first biopsy at that same time. Something they will have to be careful about in the next few weeks when they do the biopsies.
They said it is really easily perforated so they have to take extreme caution when doing them, but they have to be done to check for rejection
as there is no blood test to check for rejection only actually looking at it.
So there we have it. He looks good and is doing great. Keep praying, the next few weeks will be the most critical.
A list of new things Levi has:
1) Small bowel, liver and pancreas
2) a tube down each side of his nose (one for suction, one for putting meds, feeds etc)
3) 2 stomas. one is connected to his small intestine, one his colon
4) several new IV and arterial lines
5) breathing tube
6) 2 drains
7) a G tube
--I think that's all, but he's got a lot going on and I could have forgotten something. Most of which they will gradually be taking out. Some
thing like the stomas and the G tube will be there for a while.
thank you all again for everything. I love you all.
Laurie
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SATURDAY, MARCH 08, 2008 08:52 AM, EST
Me and Robin headed to bed about 9 last night. We were completely tuckered. We got a sleep room just down the hall. We were allowed to
stay in the room with Levi, but I felt comfortable leaving and I thought we would rest better in a quiet room. The last couple of nights haven't
been that restful. Besides, Levi is a one-on-one with the nurse, so I knew he was being watched like a hawk and he seemed pretty stable.
When the nurse isn't in the room she is sitting just outside the door.
--This morning, things are going ok. Yesterday evening they did another ultrasound (they did one right after surgery) to check for blood flow
around the new organs. The surgeon was in here at the time. She seemed pleased and said that it looked better than the earlier one. They
will be doing one everyday for several days to monitor it.
--He is a little puffier this morning, but did well overnight. The nurse said his vitals had been good all night. No major issues. They haven't
rounded yet, but will be shortly and I assume we will get a better idea of what the rest of today will have in store.
--The only issue they have been having with him is keeping him knocked out. The doctors have said it takes a WHOLE LOT of drugs to
keep these little ones knocked out. They said what he is on would lay someone like me or you flat out or more, yet he still keeps wiggling
around. So they dealt with that during the night trying to keep him still. They don't want him moving around a whole lot because of his
breathing tube. But even when we came in this morning, he was moving his head back and forth and trying to move his arms and legs, but
they have his hands restrained. The nurse told me this morning that they may try to wean him off the breathing tube today so they won't
have to give him so much medicine to keep him out. I guess we will see what they say about that in rounds.
--I forgot to put the new room phone number on the last update so here it is: 513-636-3095. There it is if any of you are wanting to call.
Also I got a picture of him with our laptop today. I didn't put it on the welcome page because for some of you it may be hard to look at. I just
put it in the photos that way you can look at it if you want and if you don't, you don't have to. It's really not that bad to me, but I know some
people get queasy and I didn't want to shock anyone when they first opened the page. So it's there if you wanna see it. I know some of you
wanted a picture.--(BETH!) lol I will also email it to any of you if you want it and I made a short little video too. It just says this is the day after
transplant and we love you all and shows Levi. I will send either or both via email to you just leave me an email at llg12480@aol.com or
sign the guestbook and let me know.
......Apparently they just rounded and I didn't know it. I am sitting behind a pole and couldn't see outside the door. The nurse said the plan
for today is to take him off the sedation and get the breathing tube out. YEA! So sounds like a big day. I will probably update later today to let
you all know how that goes.
--Talk to you all later. Thanks for all the guestbook signings. I think I got a lot from people I haven't even spoken to before. So thank you for
signing. It means a lot. I really appreciate all the kind words from all of you. I love you all--I really do and I hope you know it. You all have
gotten me through this and will help me get through from now on. Levi has a really big extended "family". I never knew a little boy with so
many people that cared about him.
Take care. We love you!!
Laurie, Robin, & LEVI
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SATURDAY, MARCH 08, 2008 07:48 PM, CST
Not much has happened since my last update. They finally got him extubated(took the breathing tube out) around 6pm. It took forever to get
him woke up enough to do it. He has been doing good and breathing on his own. The only thing is where they had him more awake, he
started feeling more pain. He was trying to cry the best he could a while ago and it just broke my heart. They quickly got him some
morphine and he is resting good now. He also has had his eyes open, but it was when he was mad. I still think he was out of it he didn't
act like he recognized me, but it was still good to see those baby blues.
--How much snow did you all get? Here in Cincinnati there is around a foot. We heard on the news we are in a level 3 snow emergency. It
said if you don't have a really good reason to be out on the roads, then they can arrest you! Have you ever heard of such. I just thought that
was funny.
--So far so good with Levi.
That's all 'til tomorrow.
Laurie
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SUNDAY, MARCH 09, 2008 03:16 PM, EDT
Ok, here goes for the fourth time. I am so aggravated. I've typed his update 3 times already today. The computer just isn't cooperating. The
first time was my fault, but the other 2 times it said my session had timed out and I know it hadn't. Each time I was finished and trying to
save it when I lost everything. URGHHHH!!
--Levi is doing good today. We slept later today and missed rounds, and it didn't help that time went forward. The nurse told me the
surgeon had been in and removed one of his drains. (He had 2 JP drains and she removed one of them). The surgeon also removed the
dressing over his stitches. It looks really good.
--His eyes are a lot less puffy today. I looked at the whites in his eyes today and they were WHITE!! Imagine that! The whites were white!
Not yellow. He has been more awake today, but he has also been crying more today when he is awake. I know he is hurting really bad. He
wakes up about every 2 hours and cries and they have to give him more morphine. Then he goes right back to sleep. I know each day will
get better though. The only sad thing is that they will be taking him back to surgery in a few days to stitch up the muscle layer and we will
have to start all over again. But hopefully with the muscle layer sewn up it won't put so much pressure on the skin to hold the incision shut
and hopefully it won't hurt as bad.
--I have more good news today. A friend I met at a support group on yahoo wrote me and told me that her daughter,Kaylee, had her
transplant Friday too!!! You may have seen where she signed the guestbook today. Her website is www.caringbridge.org/visit/kaylee1
--Stop by and wish her the best.
Talk to you later.
Laurie
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MONDAY, MARCH 10, 2008 07:30 AM, EDT
Today is one of the bad days of this journey. Not terrible, but definitely a small setback.
--Yesterday evening he started having trouble with one of his lungs. And also his urine output had went down and they were watching that
because they are concerned about his kidneys. He was getting a lot more swelled last night before we headed to the sleep room because
his kidneys weren't getting the fluid off as good as they should. The nurse told us his blood levels from the antirejection meds were high
and they were holding his night dose (he gets it at 6am and 6pm). In the mornings they draw labs to see the level and that determines the
night dose. Last night it was too high so they held his night dose. They said that med is hard on the kidneys and that is why they weren't
working as good. They were going to give him some Lasix to try to help get the fluid off his body.
--Me and Robin headed on to bed around 10pm. At 3:30am we got a call in the room. He told me that Levi was in more respiratory distress
because his lungs had started filling up with fluid. They had talked to Dr. Alonso(surgeon) and she felt he needed to be put back on the
ventilator. They are also holding his doses of the antirejection med until that level comes down. Hopefulley that will give his kidneys a
break and then they will get rid of some of that extra fluid off his body. He said they were getting stuff ready to intubate him at that time.
-I tried to go back to sleep, but it was hard. I just kept worrying. I think I did fall asleep after about an hour. Then I woke again at quarter til 6.
I finally drifted off again and the alarm I set woke me up at 7. I wanted to see him so I got on up and headed over here to see how things
were and update real quick.
--When I got here the nurses were giving report outside his door and I asked how he was doing. She said they had to intubate (breathing
tube) him and they also had to give him some blood pressure meds to get his blood pressure down. The blood pressure is another side
effect of the antirejection meds. He will have to be on BP meds a lot.
--The surgeon was in the room when I came in and she was listening to him. She said she could hear breath sounds on that side now.
And told him "it's hard to breath with one lung, huh, buddy?"
--She told me it was not an unexpected thing to happen. He got off the breathing tube earlier than most do. So it wasn't surprising that he
had to go back on it. That made me feel a little better. She told me that the breathing tube would help the lung expand.
--So now I am not so worried. I'll probably nap all day. I'll let you all know if anything changes. They haven't rounded yet, so I'm sure we will
find out more then.
--I'm gonna go wake Robin up, he wanted to sleep a little longer while I updated. I told him I would come update then we could go down
and get some breakfast. I feel better about Levi and I'm going to go get something to eat.
--Until later,
Laurie
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MONDAY, MARCH 10, 2008 05:36 PM, EDT
Well, not much has changed since this morning. His kidneys seem to be working better. They have also given him some lasix to help with
the fluid build up so he is putting out urine better today.
He seems to be resting much better today. They changed around his pain medicine and sedation this morning. The nurse said they were
having to give him pain medicine every half hour. So today they have him on some sort of drip and he has been resting peacefully all day. I
am glad. He was so pitiful yesterday. He would look at me with those big baby blues and just cry. He just don't understand why he's hurting
so bad. So I am glad he's rested today. I haven't heard him cry once.
One of the doctors came by today and said they plan on starting the scopes and biopsies on Wednesday. And they will do them 2 x a week
This is to watch for infection and rejection. He said they do it in the room and it doen't hurt they don't have to give them and pain medication
for it. They just go in and look at the bowel and take tiny bites to check for rejection and infection.
I guess that's all for now. Love ya all!!
--Laurie
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TUESDAY, MARCH 11, 2008 09:43 AM, EDT
Things are better today. They took out the other JP drain this morning. They had to up his sedation a little. He doesn't wake up, but he gets
real squirmy. They also are going to adjust his ventilator settings a little to work on getting him able to be off of it in a day or so. They plan
on doing the other surgery on Thursday if all goes well. That is, if they get most of this excess fluid off of him and his lungs are getting
better. They will do the surgery before they take him off the vent.
--So that is all I know right now. Probably won't change too much today. Robin has headed home today. To spend some time with the boys
and pick up a few things. He only packed things for a few days stay, not a few months. so pray he has a safe trip home and back up here
tonight.
--Laurie
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TUESDAY, MARCH 11, 2008 04:22 PM, EDT
The surgeon just came by and she said he is on the schedule for his surgery on Thursday... As long as the swelling has gone down. If the
swelling is down it will be easier to pull the muscle layer together.
--Also the ICU attending doc stopped in and said his xray of his chest showed his lungs and they looked good. No more collapse. YEA!
Laurie
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WEDNESDAY, MARCH 12, 2008 11:14 AM, EDT
Nothing much has changed today. They did a scope this morning and took biopsies. Dr. K said everything looked good. They will do the
scopes 2 x a week for about 8 weeks. The endoscopy nurse said we would be seeing a lot of her.
--They also increased his diuretic (to make him pee more) to get more of the excess fluid off before surgery tomorrow.
--That's all today.
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WEDNESDAY, MARCH 12, 2008 08:30 PM, EDT
Nothing much new, I just wanted to let you know that his surgery is scheduled for 830 in the morning(THURS). I'll let you know how it goes
later tomorrow.
--Laurie
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THURSDAY, MARCH 13, 2008 10:55 AM, CDT
Surgery went well. They came and got him around 830 and he was out by 10. He's closed up now. The surgeon said everything looked
good in there. They did a biopsy of the liver before they closed him up because that would be their last chance to see it. She also said his
lver numbers can change after surgery and they wanted to know where things stood beforehand so they would have something to
compare it to. And they would have a better idea if the liver numbers were from surgery or some other reason. That's all I have to update for
now. I just can't believe how good his color is!
--Our preacher, Charles got here right before the surgery and has just now left so wish him a safe trip home.
--Laurie
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FRIDAY, MARCH 14, 2008 05:24 PM, EDT
Not much new today. They were going to try to extubate him today, but he had an xray this morning and said his lungs looked a little "hazy".
So they adjusted the pressure to expand his lungs more. They said his respirations were good, they just wanted to expand them a little.
Don't want another episode of extubating him and then have to put it back again. I'm all for that. I want him to get off and stay off. So they
said they will probably try to get him off tomorrow. Maybe we'll get to see a glimpse of the old Levi again. It's been a week, I'm missing his
smile something awful.
--I miss my other boys too. It's been rough. Robin is leaving me tomorrow. He has to be at work in the morning. He is off Mon and Tues, but
is going to do some stuff around home. And his next day off won't be until next weekend. That's how long it'll be before he will be back. I am
sure the boys will enjoy having daddy at home. It's gonna be this way for a while, we just have to get used to it and know that it will be back
to normal sooner or later.
--Love you all, Laurie
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SATURDAY, MARCH 15, 2008 10:27 AM, EDT
They still don't think he's quite ready to extubate today. Close, but not quite. They said maybe tomorrow. They are really being extra cautious
and making sure that he will be able to get off and stay off this time. I would much rather him stay on it than for them to extubate him and
then the next day have to be intubated again. That would just be harder on him than just leaving it in another day or two.
--They changed around his sedation a little yesterday and I think it is working a little better. They aren't having to give him as much. And
once the breathing tube is out, we won't have to worry about keeping him sedated. I can't wait to see those baby blues again. (well at least
baby blues that aren't high as a kite)
His swelling is almost completely gone. His color is great. It is amazing!
He's getting some blood today. The said his hemoglobulin was low, but was probaby because of them. They have been drawing lots of
labs. So nothing serious.
That's all I can think of for now. Oh, I just wanted to let you all know (FYI). I am working on another page for Levi. For those of you that don't
already use this address it is www.levishawn.com. We bought the domain name shortly after starting the caring bridge and right now it is
just set up to link it to this page. (ie. if you type in that address in your browser, it will just bring you here.) I think most of you know this
already. We did it because we thought it would be a lot easier than typing the whole caringbridge address. So I am working on fixing that
site as one by itself. It will probably be awhile because it entails a lot of work, but I think it will be much better than this one. Such as, this
site only lets me upload 12 pictures. My site will have as many as I want. Also I can set up different pages on my website for Levi's
brothers, family, pets, Levi's grandpa, you name it and I can have a separate page for it. I can upload video or whatever. I also want to use it
to educate people about organ donation and what a wonderful gift it is. And also educate people about what caused Levi to need a
transplant. And all the problems that come along with it. I want to be a source of information for someone else that is going to be going
down the same path. It was a while before I found the support group on yahoo and until I did, I felt so lost. Those people helped me
understand a lot. I just want to be able to do that for someone else. So once I get it up and running, I will let you all know. It will be a good
thing.
--Until later, Love you all, Laurie
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SUNDAY, MARCH 16, 2008 10:08 AM, EDT
Baby boy had a rough day yesterday. Around noon his tacro levels (I am sure you will be hearing this word a lot from now on. it is the
rejection medicine) got a little high again. His heart rate went up, he wasn't peeing good again, he started swelling again because he
wasn't peeing. So they were waiting to see how he did throughout the day to decide if he could be extubated today. They have to start
another sedation medicine that is easier to wake up from before they extubate him and they weren't sure how he would do the rest of the
day. So NO extubation today. BUT the good news is, later in the evening as the day progressed, he started peeing alot more and the
swelling started coming down again. It was all related to the tacro levels. He starts having those problems when the levels get too high.
They are holding the dose again and it seems to be helping. They think he should be ready to extubate tomorrow.
--I had to sign a consent for the other sedation medication that they will use. (It apparently has more risks than what he is on, but think it is
best to use it than trying to go cold turkey wit hthe meds he is on now because it will take much longer for him to wake up) He is on 3
different sedation meds right now. This new one will replace all three. The doc said it is easier for them to wake up quicker than on the
other 3. They will start that medicine (propofol) at midnight and will only run it for 12 hours---time to get the other sedation medicine out of
his system. They don't like to run it longer than that because it isn't safe. Then when he starts to wake up tomorrow, they will take the
breathing tube out. So hopefully if all goes well, he will be off the ventilator sometime after noon tomorrow.
--That's all I have for now.
**HUGS** Laurie
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MONDAY, MARCH 17, 2008 09:43 AM, EDT
Today is supposed to be the day. They are planning on getting the tube out around noon. The respiratory tech said he still may have to be
on oxygen for a while after they extubate him, but we would just have to wait to see how he does. He did ok overnight with the other
sedation. They started him on a medicine about 9am to help with withdrawls from the other sedation medicine he was on, the
morphine,etc. I guess he would have withdrawls after being on it for a week. Hopefully he won't have it too bad. We will just have to wait
and see what the day brings.
--He looks good this morning. If he gets woke up good enough I will try to get some pictures and post them later and put another update
on how he is doing.
Laurie
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MONDAY, MARCH 17, 2008 01:15 PM, EDT
They extubated him a little sooner than they were planning.Around 10. He started waking up and they said he must be ready to get that
thing out.
--He is having some pretty bad withdrawls, though. He still isn't AWAKE awake. His eyes will open, but he has the "nobody's home" look. I
am sure it might take a few days to get all this out of his system. They have been giving him adavan and methadone (yeah the one they
use to get druggies of pain medicine) to help with the with the withdrawls.
Also he isn't peeing very good again so they are watching that too. It is probably from the rejection meds...Again. They gave him his dose
last night and I guess he had one this morning.
So soon as he is AWAKE awake, I'll get some pics to you guys. I'll probably post one on here and also send it to you all in an email.
--Take care.. Laurie
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MONDAY, MARCH 17, 2008 08:07 PM, EDT
I don't have a lot to update right now. I had just taken a couple of pics of him while he was awake and wanted to post them tonight. He's
coming around, but still not quite there. He knows we are here though. He will follow us with his eyes. Now he is just acting like he don't
feel good. And that's totally understandable.
--They put him on a high flow of oxygen to see how he does. With the withdrawls, he gets to breathing fast. So they put him on a high flow
because it pushes the air in better. The high flow is not necessarily because he needs that much oxygen, but to help him breathe easier.
He's having a little tough time with the withdrawls, but they are giving him medicine to help. And it seems to be working pretty good.
They said at evening rounds that as long as he is able to keep the breathing tube out they will probably take out the artery line out(in his
wrist), one of the central lines(in his collar) and maybe the catheter. So tomorrow will be a day of getting more stuff gone. That is if all goes
well with him breathing on his own.
--He is peeing a little better now. The nurse said he was a little "dry", I guess meaning a little dehydrated, and that was probably the
reason. And it has picked up more throughout the day. So hopefully it wasn't from the rejection meds this time.
--He has thrown up a few times today after they give him meds. That's nothing new for him though. He never has been able to keep much
volume down. Especially a lot at one time. There could be other reasons too though. They gave him some nausea medicine and hopefully
that will help. They said the withdrawls can cause nausea.
--They did the scope first thing this morning. I am not sure if I said that or not in an earlier update or not. Everything looked good. He will
have the next one on Thursday.
I think that's all. I promise, no more updates tonight. I think I've written 3 today. I'll email that picture to you all here shortly. I also put another
one on the picture page of a picture I drew of him. Hope you like it.
--Later, Laurie
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TUESDAY, MARCH 18, 2008 07:47 AM, EDT
Little man had another rough night. He had been breathing fast all evening yesterday and it didn't improve overnight. So first thing this
morning, they decided to intubate him again. They said where he was working so hard and breathing so fast, he would eventually tire out
and stop breathing. So they wanted to do it under controlled circumstances instead of emergency ones. As far as his numbers, they
looked good, they just weren't happy with him breathing so fast and his heart rate fast. He was breathing anywhere from75-100 breaths
per minute. That is over 1 breath per second. You try breathing that fast and see how tired you get. I was feeling so sorry for him. He looked
so uncomfortable, but he is resting really good now. I don't think he slept much at all last night, so I am glad he is resting now.
He started to run a FEVER through the night. They started him on antibiotics and did cultures and stuff, but we will have to wait to see what
grows.
--I told you it was a rough nite.
--So we had another setback, but we know that there will be many. The surgeon told me this morning it is a marathon and there are gonna
be some bumps along the way, we just have to pace ourself.
I'll let you know if anything changes. The cultures will be at least around 12 hours before they get a preliminary and they drew them around
1 am.
I'm gonna try to get some rest. Now that he is intubated and sedated again, it will be easier to sleep. They were anticipating it all night and
finally decided that he needed help.
--NITE--or well, morning, Laurie
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TUESDAY, MARCH 18, 2008 06:30 PM, CDT
Levi has done so much better today. They have him sedated, but not as much as before. He has been awake and looking around. So
sweet. You can tell he feels a lot better. The fever only got to 100.4 so hopefully it was nothing to serious to worry about. Dr Kocoshis thinks
it could even had to do with the respiration problems he was having. That would be better than rejection or an infection. Speaking of
infection, the cultures haven't grown anything the last I heard. YEA!
--He is so beautiful. It is so much easier on me when he rests comfortable. And it has been nice to talk to him and he seems to know and
listen to what I am saying. They aren't giving him more sedation to keep him knocked out because he seem content even when he is
awake. Just enough to keep him comfortable. He's not having the withdrawl symptoms like yesterday either. Today has been a lot easier
on him I am sure.
--His breaths per minute went from 75-100 yesterday and last night to 20s-40s after they put him back on the vent. They said his volumes
are looking better too.
--They also started him on small feeds today. Only 1ml (cc) an hour. So barely anything, but they start slow and that's ok with me. They use
a different kind of formula than the one he was on. It is only half strength and really easy on these little fellas. So we'll see how he does
with it.
--The nurse said his labs are looking good. I am pleased. Hugs and kisses to you all.
Brandon wrote a poem about Levi. I have it hanging above Levi's bed. It is hand written and so sweet. If you like it, send him an email. He
would really like it. Brandonhgoff@aol.com
--I added it to the welcome page photo.
--And I would appreciate you sending him some love.
--Laurie
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WEDNESDAY, MARCH 19, 2008 09:00 AM, EDT
Levi had a much better night last night. YEA! His numbers are looking good and they are starting to wean him off the ventilator. They hope
to get him off around Friday. The doctor that put the breathing tube back in yesterday saw some swelling in his epiglottis (back of the throat
flap). Probably caused from the previous intubation. They have him on some steroids to help get the swelling down.
--They did an RSV (respiratory virus like he had in Jan) test last night. They said he was having a lot of secretions. The results aren't back
yet, but I don't think he has it and I don't think they do either. Nevertheless, the hospital policy is to put him in isolation until they get the
results back. So the nurse is watching that close, she said. That way she won't have to wear all that get-up.
--They also took the foley catheter out this morning. YEA! I bet he is glad for that. And they are increasing his feeds slowly 1ml (cc) every 12
hours to make sure he is tolerating it.
--All is well today. Thanks for all the thoughts and prayers.
--Love you guys, Laurie
--PS. If you like Brandon's poem that's next to Levi's welcome page photo, send him an email. Brandonhgoff@aol.com
I would really appreciate it and so would he. I'm not there to hug him for it, so maybe you words will make up for it.
--Also I am getting a new neice today!!! I think it is Madilyn Brooke (sorry, Beth, if I spelled it wrong--or get the name wrong)She will be
called Maddy(again, I may be spelling it wrong). So, I'll let you all know when she gets here. I miss not being there. I've missed 2 nephew's
births and now am missing my neice's. :( Oh well, I gotta be here with precious. And I'll see them soon enough.
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MARCH 18th 2008 7:44 p.m.
Welcome to the new site. Hope it's better than the caringbridge. I will be able to do so much more with it. It's still got a lot that I have to work
on, but the Journal is up and the photo links of the boys and me and Robin are up. Take some time to cruise around. Hope you like it.
--I got my new niece today. YEA! I can't wait to get a picture! Congrats Beth and Chad!!
--Laurie
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MARCH 20th 2008 11:45am
So how do you like the new site so far? It still has a few kinks and I still have a ton of stuff to add. But is is at least viewable now. The
journal pagesare ready, the donor links are operational, the photo pages of me and Robin and the boys are ready. If you have any
suggestions, please email me and let me know. You may find something that might make it easier to navigate. Like I just went and looked
and I didn't have a navigation bar on most pages. That will be fixed once I update. AND in case you didn't catch it before I fix it, I left out an s
in Levi's Story on the navigation bar. So please let me know if you find anything. I don't want it to look bad. Also I don't have a guestbook yet
so I am linking the caring bridge guestbook for now.
--Levi is doing very well today. He is still sedated, of course, but doing well. All the cultures have been negative so far and they have
stopped the antibiotics. The RSV test was negative so he is out of isolation. He had a scope this morning. All looked good. He saw some
formed stool, which, he said, was a good sign. His feeds are going at 3 ml (cc's) an hour and will be increased to 4 very shortly (around
noon). The plan is to get him off the breathing tube tomorrow. Please Pray the little guy can stay off this time.
--I will post a few days updates at a time on this page. That way if you miss a day or two, you won't have to go looking for it in the journal
archive. I think that is all for now. I have a lot to get working on. I am trying to fix a video slide show to play on the main page. And will (if I can
get the main one to work) for each of the photo links. Right now it links you to the video players site to watch, but I want it toplay on the site,
so I have some work to do.
Love you all,-Laurie
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MARCH 21st, 2008 11:25am
The breathing tube is out! AGAIN! They extubated him about 9am. We'll just have to wait and see how he does! To me, it seems he is
doing much better than last time. His breathing is a little fast, but nothing like the other day. He don't seem as uncomfortable as he was
before. He is sleeping now, but was awake before they took the tube out and for a while after. He still was a little dazed, but you could tell
he's coming around. They must have gotten a jump on the withdrawls or it hasn't kicked in yet because he doesn't seem to be having any
of the symptoms like he had on Monday. He is on high flow of oxygen to keep his O2 levels up. Also his hearbeat has been a little irregular
since the tube came out so they are getting an EKG in a few minutes. I'll let you know. They didn't seem TOO concerned, but are watching it.
--Me and Levi will be getting some important visitors tomorrow. BROTHERS are coming! They won't be able to come back because of him
being in ICU, but at least I will get to see them. I miss them so much! Robin is going to take them to the aquarium afterwards. So hopefully
they will have a good time. Also some of my family is coming too. So it should be a good day...as long as Levi behaves!
--New things on the site to see: Levi Goff Support Foundation, video of Levi on photos page at the bottom, and definitely watch the
slideshow on the main page. It has over 100 pictures, so be patient. I think you will enjoy it. It has music, but you have to click on it and then
click the speaker button to play it. The pictures will be playing automatically. There is also a slideshow on mine and Robin's photo page.
More will be added later.
--Love ya Laurie
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March 22nd, 2008 9:45am
Levi did excellent yesterday. He was even playing around a little. He would reach for toys when I would hold them in front of him. Still no
SMILE, but I'm working on getting it out of him. He did almost let out a little excited squeal when I was playing with him. He grabbed the toy
and tried to eat it! I am so glad he's coming around. He is breathing a little faster today, but they think it is probably related to the withdrawls
and not his respiratory condition. We'll see how he does today. He may just have to breathe fast for a while until he gets all the drugs out of
his system. They are helping him as much as they can. He is still on High Flow oxygen. To help keep his lungs pumped up.
--He got the big NG (nose to stomach) tube out yesterday. That is the same kind he had at home, but it was a lot bigger and they were
using it for suction. So that gave the little fella some extra room in his nose. He still has an NJ (tube from nose to the jejunum--part os the
intestine), It does the same thing the NG he had before and looks the same. He is getting his feeds (5ml/hr--will go to 6 at noon) through
the NJ. So he will probably have that one a while. He also has the G tube (goes straight to the stomach from his belly). He is getting his
medicine through that one right now. He will probably have it a while too. They are going to take out one of the central lines out today.
Everyday we are losing something. He is making progress. He will still have one central line, an arterial line and his PICC( the one he had
at home).
--The boys are on their way!!! Yea! I think I am gonna go to the aquarium with them since my family will be here to keep an eye on Levi. It
will be good to get out and have a good family day. I can't wait until Levi gets outta here and can do stuff like that with us. They should be
here around 1 or 2. It's gonna be a good day!
--Until later, Laurie
------------------------------------------------------------------------------------------------------------------
March 23rd, 2008 12:25pm
Better and better each day! Levi got rid of a central line and his arterial line yesterday. Today they are trying to wean him off the oxygen. He
is already way lower than he was yesterday. He is off the high flow and just on regular oxygen at 2 liters. He was on 8 liters with the high
flow yesterday..so that is good. He has pulled the oxygen off now and they are seeing how he does without anything.
--They did an ultrasound of his heart last night because the past couple of xrays were showing his heart slightly enlarged. The ultrasound
showed a little bit more than normal amount of fluid around the heart, but said as long as he is not acting worse, they are just going to be
watching it. If it gets worse (they don't think it will), they can take a needle and remove it.
--I was so glad to see the boys yesterday. We had a really good time at the aquarium. My sister went with us. We petted sharks and saw all
kinds of neat stuff. Toby really enjoyed it. He was looking in amazement and pointing at everything. My dad, brother, sister-in-law, and
nephew also visited. The took turns watching Levi while we were at the aquarium. It was really good to get outside and see people i hadn't
seen for a long time. Especially the boys!
--The nurse told me today the I may get to hold Levi a little later. I am beside myself! I can't wait. She said when she changes his bed, she
will let me. YEA!! She also put him some clothes on (well, a button up shirt). That will be as dressed up he gets this Easter. He got an
Easter basket last night with a book and a bunny. I told him that before we get out of here, we won't be able to find him for all the stuffed
animals. He is getting quite a collection! He got a transplant bear a couple of days ago. The bear is supposed to have had a transplant too
and is supposed to help the kids deal with theirs. I thought it was cute. I think I will even give him some stitches like Levi, so they will look
the same.
I think that's all. Hope you like the new pictures.
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March 24th, 2008 10:40am
Levi had a good day yesterday. The only thing was he was breathing fast. He is still doing that today so they have put him back on the high
flow oxygen hoping that will help him out. He was off of oxygen all day yesterday and did fine other than breathing fast. Hopefully he will
slow it down and start breathing normal again soon.
--I got to hold him yesterday!!! I was so happy. Tears welled up in my eyes. It was a tender moment. I held him for a couple of hours. He
stayed awake looking at me the whole time. We just watched Noggin (kids channel) and talked a little. Well, I talked a little.
--He has his scope and biopsies today. Everything looked good. The doc said unless he has microscopic rejection(that's what the
biopsies are for), he didn't see any signs of gross rejection (lesions, ulcers, etc). SO YEA!!!! He said his liver numbers were up a little
yesterday ( liver numbers can be a sign of rejection), but they were back down a little today. He said they would hold on doing a biopsy of
his liver for now, since the numbers came back down. He said it could also be from where they put all the organs in together, the bile ducts
get cut and sometimes they don't function properly so they give them Actigal (which he was on before because of the TPN liver cholestasis,
but the Actigal helps better now that he can absorb more of it with his new bowel!) So we will just have to wait and see what his liver
numbers do over the next couple of days. The doc said that as long as he can make it another week without significant signs of rejection,
then he will be doing good. I guess that is the time frame that most significant rejection occurs. Also he said he expects him to be down on
the regular floor in a couple of days (but he don't make that decision, the ICU team does)
--He is at 9ml/hr on his feeds now and will go up to 10 at noon. They are also decreasing his TPN a little.(I don't know if you all know he is
still on it[TPN]--- he will be until he is absorbing enough nutrition from the feeds)
That's all for now. Robin is on his way. We have to go to Lex to run a few errands. His aunt is coming with him to watch Levi while we are
gone. I will update later this evening if anything major happens, if not I'll chat with you all tomorrow.
---Laurie
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March 25th, 2008 10:30am
Levi's doing pretty good. Robin's aunt Connie was able to get a few smiles out of the little stinker yesterday. He is still yet to show me one. I
think he's mad at me. The last thing he remembers is being happy and in a good mood and when he woke up he felt like he was hit by a
Mac truck and I think he thinks I pushed him in front of it. Oh, well. He'll just have to get over it. I'm sure he'll come around eventually. He
was on High flow O2 all day yesterday and last night. He seems much better today. He isn't breathing near as fast and he isn't doing the
grunting he was doing along with it yesterday morning and over the weekend.
--The doc told me this morning that the biopsies showed a small amount of rejection. WAIT, don't start freaking out. 80% of kids have
some sort of rejection at least a couple of times. They put them on steroids for a few days and most rejection responds to that treatment.
His is NOT severe by any means. He has no ulcerations or anything. So calm down... This is ok. We expected at least some rejection. It's
nothing to hyperventilate about. So he will be on steroids a few days and they will do another biopsy on Thursday. The doc said this also
explains the liver number increase.
--PLEASE SIGN THE GUESTBOOK! I finally fixed a new guestbook for our new website. The link is at the top of this page in orange. There
is also a separate link to view all other entries into the guestbook by other people. Thanks to everyone that's signed already. I still may
tweak it a little. Love you all
----Laurie
Please take the time and check out this website. I've asked for your prayers for him before. He is very sick again and the family could use
any extra words of encouragement you could offer. I just can't imagine what that family is going through. Pray that God will be with them
and that their precious boy will be better soon.
--Laurie
----ANOTHER UPDATE TODAY! They said if his respirations are good today, we might get to go to the regular floor tomorrow. Out of ICU,
YEA!!!!
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March 26th, 2008 6:15pm
No news is good news. Nothing really new going on today. He is still breathing a little fast so we are still in ICU. They took him off high flow
again and put him back on regular oxygen. He's rested really good today. He has another scope with biopsies in the morning. Pray they
look better. I guess that's all for today. TPN is at 12.7 ml/hr and feeds are at 16ml/hr. They are increasing the feeds by 1 ml every 8 hours
now instead of every 12 and decreasing the TPN. Maybe we will be rid of the TPN all together before long. All is good.
---Laurie
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March 27th, 2008 2:05pm
We made it out of ICU!! That's why my update is a little later today. We just got down here a couple of hours ago and we had to get settled
in. He is still on oxygen. He is still breathing fast, but they are comfortable with it. They are trying to wean him off, but it may take some time.
He had his scope and biopsies this morning. The scope looked good. The rejection hadn't gotten worse. That's a good thing. But we will
have to wait on the biopsy results to see if he needs more steroids. The results should be back later today. I may update again later if
something changes.
--I am so glad to be out of ICU. Now I can actually eat and drink in the room. (We weren't allowed to in the other room) I can order room
service here and they will bring it up. That's a nice service they have here. You have to buy the meal tickets for that downstairs though, They
are $5 each and you get an entree, 2 sides, a dessert and a drink. Not too bad, you can't hardly get that downstairs for that price. You call
their # and give them your ticket # and your order and then they bring it up in about 45 min. We also have a shower in the room down here.
Upstairs you had to go down the hall. So we will be much cozier down here, I think. I put our name on the list at Ronald Mcdonald House
today. It will be a few days before I hear anything. It will be a better place to stay when Robin is here with me.
--His feeds are at 18ml/hr and his TPN is down to 10.7ml/hr. We're making progress. His feeds at home never made it past 14. He's
making car noises now. How cute! I haven't heard that for weeks. He's also smiling more and laughing a little more each day.
Talk to you all later. Love you guys!!
If you wanna call, I have free long distance and roaming now, but it's a new cell phone #. You can call anytime you like. 606-219-7826. Also
the room # is now 513-636-9507. If you have my old cell #, get rid of it. I won't have that anymore.
----Laurie
--Oh, check out Devin's page. Prayers have helped him. He's improving, but still not out of the woods. Say another prayer for him
---4:30pm Biopsies look GREAT!!
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March 28th 2008 11:30am
3 WEEKS POST-TRANSPLANT TODAY!!!
All is well in the land of Levi. Morning rounds are later here on the regular floor. They don't start until 10:30am. In ICU they start at 7:30am.
So my updates may be a little later. Probably around this time to noon. He is still breathing fast, but is happy and content. They are just
watching him. If he becomes irratible or uncomfortable because of the breathing, then they will get concerned. They took him completely off
the oxygen this morning to see how he does. He goes back and forth on and off. They said he may breathe fast for a while. They
---His feeds are at 21 ml/hr (WOW!) Since he is handling them so well, they are going to start increasing them every 4 hours instead of
every 8. (Whoohoo!) They said he should be completely off of the TPN by tomorrow. (WHAT?! Did my ears deceive me? No more TPN?!!!
Unbelieveable!) Their goal of feeds is 30 ml/hr (30 ml = 1 oz). Once he gets there and is off the TPN, they are going to increase the
concentration of the formula he is on. It is at 1/2 strength now and they are going to up it to 3/4 strength. He is doing so good.
---He has been so happy. Me and him have been playing. He's been laughing and pulling my hair. He's back to his old self again. Life is
good!
---In case you didn't see my updated update yesterday: His biopsies from yesterday looked great!
-Love you all, Laurie
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March 29th, 2008 10:15am
Levi threw up a couple of times last night and once this morning when the nurse was giving him his meds. His output fom the ostomy has
been a dark color since yesterday evening. They don't seem too worried and think the dark color is from the biopsies Thursday. They are
watching it for now. The volume coming out hasn't increased, just the color changed. They are pleased to see that he is having "chunks"
come out into the ostomy bag. (it's not called a colostomy, so don't think I am misspelling it. It is called an ostomy--simply an opening in
the abdomen, or an ileostomy--because that is the part of the intestine that comes out--the ileum: Just thought i would clarify that for you
all. And he actually has 2 openings right next to each other) The docs said they are impressed on how well he is tolerating the feeds
increase. They said they aren't normally able to increase them as fast. He is at 27 ml/hr now (goal 30 ml/hr)
--He probably won't be off the TPN today. His input/output isn't where they want it. (How much is going in compared to how much is going
out) He is positive which is good, but they would like the positive number to be higher. His is about the same. He has just about as much
coming out as going in.(At least he is not negative--that would mean dehydration) So they didn't want to cut off the TPN because it is a little
extra fluid that they would be taking him off of. He is only at 2.7 ml/hr. So it's not much. They are just going to hold it at that for a while.
--His blood pressure has been runnning a little high for the past day or so. They are going to put him on a BP med today to help with that.
Remember, I said the rejection meds can cause that. This will probably be an issue from now on.
--I got a room at the Ronald McDonald House yesterday. It was nice. The whole facility has a "homey" feel. I slept there last night. It was a
little lonely by myself. I'm not used to that much privacy. It will be much better when Robin will be with me. There are no TVs in the room.
When I went in last night, it was like--This is TOO quiet. I'm not used to completely quiet. I need some noise! But the bed was sooooo
much more comfortable.
--That's about it for now. Over all, they are very happy with his progress and not too concerned about the minor issues. That is good news!
Thanks for all the prayers. You know we love you.
--Laurie
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March 30th, 2008 10:50am
Not much new today. They are still watching his breathing, but it has stayed about the same. It hasn't really gotten any worse. His lungs
still sound clear so they are just keeping their eye on that. He is off of the oxygen completely, I don't know if I told you. They took him off the
day before yesterday, I think.
--They are changing the concentration of his feeds to 3/4 strength to help him get more calories and hopefully gain weight. His TPN is still
at 2.7 ml/hr and they didn't say anything about completely cutting that off yet. His feeds are at 30 ml/hr! He has already reached the goal
they set for him. I am so proud he's doing so well.
--He had to get some blood yesterday. No biggie. It wasn't critically low. Probably from all the lab work they do. So he got refueled.
--That's about all for now. Robin is heading up tonight with the boys after he gets off from work. I will get to spend the day with them at the
Ronald McDonald House and Robin is going to stay over here with Levi. I will be so glad to see them. I miss them so bad and I know they
miss me. They are all dealing with it in their own way, but nevertheless, it has been really hard on all 3 of them. They always ask when I am
coming home. How do you answer that, when you don't know the answer yourself? I just tell them that we just have to make it through it
and then we will be back together soon. I tell them to just keep praying that Levi gets better as quick as he can. When it's over, it won't
seem like it has been such a long time and we will be all the more thankful for the times we are together.
--Love you all! Laurie
--Another update today. 4pm.The biopsy did show signs of rejection again. He will be on the stronger dose of steroids for 3 days and then
back to the normal dose if his biopsy Thursday is improved. they didn't say if this would delay discharge or not. This explains the liver
numbers as well.
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March 31st, 2008 3:00pm
I have been at the Ronald McDonald House all day with the boys. They are having a really good time playing in the play rooms and stuff.
Robin has been with Levi. His scope from this morning looked good. His liver numbers have been going up a little over the last few days
so we will have to see what the biopsies look like. They think the liver numbers might just be because the donor was so small and it is
trying to work harder for a bigger baby.They have taken him completely off the TPN and lipids. Tomorrow they are going to change his
formula to what he was on at home. They are going to do some sort of test to see if they can find the reason behind his breathing fast.
They are also going to remove his other central line. Then he will be just left with the PICC that he came with, the G-tube and the ileostomy.
i haven't heard when they will be removing the staples, but I would think pretty soon.
--I have been emptying his ostomy bag. They showed me how yesterday and I feel pretty comfortable with it. They also showed me how to
change the bag, but I haven't done that myself.
--They told Robin they will be starting to work with us on training us on all his new stuff because they want to discharge him
Thursday.(Probably to just the Ronald McDonald House, but still! Can you believe it?) We have to do a transitional period where we will
provide ALL his care in the hospital before we leave for 24 hours. That's just to make sure we are comfortable with everything while we are
around nurses and doctors. I know how fast things can change so I don't think Thursday is set in stone. We will just have to see what
happens the next day or 2.
--This is what happens with 1 day of Robin sitting with him. All this stuff starts happening. I should let him stay with Levi more often.
He is such a happy baby and doing so well. Knock on wood
Until later. Love you all. I love the power of prayer.
Laurie
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| TRANSPLANT MONTH |
| MARCH 7th, 2008 |
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