June

June 2nd, 2008 9:45pm
We had an excellent weekend! I loved being home. I wanted to stay there. All of Robin's family was there. We
even was able to take a picture of all the grandkids together for the first time.
Yep, there's 10 of 'em. I have 4, Robin's sister has 4, and his brother has 2.(and PETEY the dog always has
to get in the picture. He thinks he's a kid too!)) Brandon is the oldest at 8. They all play good together...most
of the time. I am so glad they have kids to play with and grow up with. I can't wait to get back home to stay.
This summer will be awesome!
--We had a cookout. My dad and my brother, his wife and my nephew and my sister also came. I had a really
good time. I think Levi did too. He actually ate like 7-8 small bites of his baby food(chicken). He- wasn't turning
his head he just kept opening his mouth for another bite. This was HUGE! I looked at Robin and said, "Look
what he's doing". We were both shocked at how much he ate. What he ate probably equaled maybe 1 big
baby spoonful, but this was a lot for him! Maybe he just needed to be home. lol (This was Saturday)
--We got back to Cincinnati yesterday. He ate pretty good yesterday too.
--Today I gave him a cookie and he put it straight in his mouth! I know you think that's a weird thing to get
excited over, but it truly is amazing to see him want food. I think the extra couple hours is starting to give him
some hungry feelings.
-- His labs looked good today. He has a scope tomorrow and speech. I can't wait to tell her how much he ate.
Love you all, Laurie
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June 3rd, 2008 11:30pm
We had a scope today. Everything looked good. We'll get the biopsy results tomorrow. He also had speech
today and did VERY good. He's taking more and more bites and drinking more and more water. I love it!!! She
gave him a biter biscuit and he loved it. He also jabbered at her the whole time she was here.
--It rained all day here today. There were qute a few severe storms around the area. Our electric was off from
about 4 until 6 today. There were tornado warnings a little north of here. So it was a rainy dreary day.
--That's all for today. Love you all--Laurie
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June 6th, 2008 11:15am
Sorry I hadn't been on in a couple days. Robin and the boys have been here since Tuesday evening. I have
to fight for my chance at the computer. lol. That's ok, I've really enjoyed them being here. They will probably
be leaving later this evening to go back. I'll miss 'em.
--Let's see what all has gone on this week. Wednesday he had PT. He did good AGAIN! He is going to be
crawling very soon. He was just behind a little, but he's catching up really fast.
--He jabbers "dadadadaa,bybybybybyby" all day long in his high pitched voice. I can't help, but to laugh at
him. It's so funny. I've been trying to get him to say "Brandon" since his name has the 2 consonant sounds he
says. I've heard it a couple of times, so maybe not much longer and he will say it on command.
--We had OT yesterday and he did good with that too. He's learned how to use his pointer finger and is
pointing at everything.
--We had clinic yesterday too. A lot of changes were made. They took him off the fluconazole. They said that
could lower his prograf level and they may need to increase his dose. We'll find that out Monday when he has
his next labs.
--His biopsy looked good so he went down on his steroid again. He said next week he will probably change it
to once a day instead of 2 x a day. You can tell he's getting less steroids because he's losing cheekiness.
--They also increased his window off his feeds again. Just by 1 hour this time, but they had to increase the
rate. Now he gets 53ml/hr (was 50ml/hr) and he gets a 7 hour window. That way he's still basically getting the
same amout, just over a shorter period. The doc was glad he's taking some bites of food. I asked about giving
him some formula or something to get calories from in a sippy cup. They gave me some vanilla flavored
Elecare (the same formula he gets through the G-tube, but flavored vanilla.) I'm not sure how it tastes, but it
smells like white cake mix. He has been doing really good driking the water. About an ounce a day, so I
thought if he would take something with calories, then we may be able to increase that window even more.
Well, he drank just over an ounce of it yesterday. I was so happy. He seemed to like it just as much as the
water. If I can get him to drink 2 ounces, that is another hour off feeds. Slowly, but surely we'll get there. They
said to let them know if he starts eating any significant amount of the baby food. That's more calories too.
--The doc said we should be able to get home by the 4th of July. I said "What about his birthday?" And he
asked when it was and I said the 1st. He said that he should be home for his birthday as long as the next
month goes well. It's getting frustrating when they say a few weeks or 2-4 weeks and each week you don't get
any closer. Each week the answer is a few weeks. I'm really gonna push to be home by his birthday. That's
been my goal. He's doing really good and there's no reason we couldn't be home and drive up once a week
for scopes and clinic, if they would schedule them on the same day.
--I have been really planning this party for Levi. I am thinking maybe the 4th of July. That's on a Friday, or
maybe the 5th. That is if all goes according to plan. I know that's a big weekend for cookouts and fireworks so
I will probably have it in the early afternoon that way if any of you have plans for fireworks you won't have to
miss them because of our party. Probably around 1pm or 2pm. I'm leaning toward the 4th. So keep your
afternoons free that day.
--Love you all, Laurie
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June 10th 2008 8:20pm
Again, I've been fighting for my chance at the computer. Nothing really spectacular going on so you haven't
missed much. I've enjoyed having my boys here. They all left a couple hours ago so it's gotten really quiet.
--Levi has been doing really good with his vanilla flavored formula. He has drank 3 oz the past 2 days. Not all
at once, but during the time he is off his feeds. I am so proud of him. He is still eating about the same amount
of baby food. 7-8 bites is all he'll eat, but that's better than nothin'.
--He had a scope today. Everything looked good, but the biopsy results won't be in until tomorrow. If it looks
good, he'll reduce the steroid to just once a day instead of twice. Should be totally rid of it in a few weeks.
(That is if he does good)
--The doc said again today that our goal is to be home by Levi's birthday! Keep your fingers crossed.
--I guess that's all for now.
--OH, OH, OH, 1 more thing. Levi can say Ma-Ma now!!! He started saying it Friday. He got mad at me when I
was feeding him and said "mamamamama," real hateful. He's been using it a lot since, but is saying it nicer.
FINALLY! I didn't think he was ever gonna say it. He always gives me a reason to smile.
--Love, y'all. Hugs and kisses.-Laurie
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June 13th 2008 9:45am
Of all people I should have known that everything was going TOO good. I'll get straight to the point. Levi got
admitted to ICU yesterday. He got seriously dehydrated FAST. He was fine and then all of a sudden he wasn't.
--I woke up yesterday morning about 6:30am to Levi squirming and being fussy, which is odd for him. He
doesn't usually wake up that early and he rarely wakes up fussing. So I thought that maybe he was wet and
needed changed. When I looked at his ostomy bag it looked like a huge overfilled water balloon that could
burst any minute. Just seeing that, I was concerned. I emptied it (making a huge mess) and measured it. It
totalled more than he puts out in a whole day. His normal ostomy output has been between 100-150ml and
hasn't been over 200ml since we left the hospital. His output is always pretty consistent. Well, his output
yesterday morning was 265ml. By the time I got the bed changed and his bag changed(because I made a
huge mess), it was almost time for the home health nurse to come draw labs(8:30am). The clinic is open at
8:30, so when the nurse got there I called our coordinator. She told me that Dr Sam said to give him pedialyte
instead of his formula and not give him his window off his feeds. (We had an appointment at 1:30 and he
would see him then) She asked if I had any pedialyte and I told her I didn't. She asked if I could walk over and
get some that there was some in the clinic. So after the nurse left, we walked over and got some. They also
gave me some pedialyte popsicles to see if he would take those.
--We walked back over and I fixed his pedialyte and put one of the popsicles in a sippy cup (it was slushy). He
liked it really well, but he had also been throwing up and wouldn't keep it down very long. (I tested his urine
(like I do everyday) for dehydration. That number was way higher than normal telling me he was already very
dehydrated. So I called the coordinator back, but she wasn't in and I left a message for her to call me back..
--Already he was slipping more and more out of it. He woke up fussy and now he was getting more and more
tired and couldn't rest. He also was throwing up more and more and the ostomy was constantly pouring out.
He sarted sweating but was cold to touch him. He was clammy. His blood pressure med was due at 12, and I
went to check his BP before I gave it. His is always high and he has to take it, but with him acting the way he
was, I wanted to know if his blood pressure had dropped. I didn't want to bottom it out if it was already low. I
tried to take it about 10-15 times in all sorts of places, but couldn't get one. I even tried it on my arm, just to
make sure the dad-blamed machine was working.
--The coord. called back a little before 1:00 and I told her about the vomitting and his urine test. She said to
go ahead and bring him in. We got ready and headed over. Levi was barely able to sit without falling over. He
was getting very weak.
--They tried to get a pressure too and weren't able. Dr Sam came in pretty quick. I knew he was getting pretty
sick. He reminded me of when we took him to the ER. He was cold and clammy and pale. He wouldn't stay
awake. I knew he was where he needed to be, but I started to panic as they were in and out. I kept telling
myself, "Don't freak out, don't freak out, he'll be ok,". I wasn't convincing enough, I guess, because when Dr
Sam said he thought the best place for him would be in the ICU where they could watch him much closer, the
tears started pouring. I think I knew he would probably be admitted for some fluid, but when he said ICU, I
realized it was much more serious than that. He kept falling asleep on me and one of the residents in the
room kept trying to wake him up. That scared me too because I knew that she was afraid he wasn't gonna
wake up.
--They got some IV fluids started while he was still in the room. One of the ICU docs said they may have to put
in another central line to be able to get him more fluids faster. They asked if I needed a break to call Robin.
Levi was so out of it, he probably didn't know I was gone. I went outside to call Robin. I talked to him a few
minutes and went back in. When I came into the room he was sitting awake in the coord's lap. He still looked
pretty sick, but his color was already improving. By the time we got to ICU he was getting back to normal and I
think the nurses were wondering what all the hub-bub was about.
--He put out well over 1000 ml yesterday which is about double the amout of blood volume a baby has. So he
was running on fumes. Once he got the fluids he perked up.He looks great this morning, same old Levi. He
wasn't Levi yesterday. He didn't smile or start playing until after we were in ICU.
--He did start running a low fever last night, but hasn't had one since. Robin came up to be with me. We went
to the Ronald McDonald about 10pm. It felt really weird not having Levi there with me. I didn't know what to do
not giving meds and adding up I and O's and having my snuggle bug next to me.
--So the plan is:
--Keep giving him fluids to replace the output from the ostomy. He is still putting out quite a bit even today.
They stopped his feeds yesterday in clinic to keep him from throwing up everything. They did all kind of
cultures and other tests to try to find out what's going on. He didn't need the other central line. He did so well
over night that as soon as a room becomes open on the floor, he will be out of ICU. They said something
about doing a scope today, but they haven't mentioned it this morning. His scope from Tuesday didn't show
any rejection so they don't think it's that. Toby is fighting a bug. He had diarrhea and ran a low fever when he
was here earlier this week. The doc said he probably had some sort of virus and Levi's docs seem to think
that is the likely cause of all this. So we will probably be here through the weekend as long as the cultures
stay negative. They will probably keep him until his output slows down so they can replace it with IV fluid so he
doesn't get back in the shape he was in yesterday.
--Thanks for stopping in to check on us. You probably weren't ready to read a novel, sorry. He got really sick
really quick and I wasn't ready for it. I was glad we were still so close. These docs keep you here for a reason.
So hopefully we'll be outta here in a few days. He looks great today. He gave me a bit of a scare. Love you
all.--Laurie
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June 14th 2008 4:45pm
Levi is still doing ok. All of his tests are still coming back negative. Even the viral ones, which is starting a
debate between the GI and surgery as to whether he is rejecting or not. GI thinks it is a virus and surgery
thinks he might be rejecting. His biopsy from Tuesday looked good so Dr Sam (GI) don't think he is rejecting.
They are giving him until tomorrow for his stool output to slow down. If not, then they are gonna scope him to
look for rejection. I am kinda leaning towards a virus because he was just around Toby with the same thing.
--They still have his feeds on hold now. GI wants to start them back, but that is part of the whole
virus/rejection debate. So they will be on hold until his output slows or they rule out rejection.
--His cultures haven't grown anything so far. His antibiotics will stop as soon as it has been 48 hours.
--I still don't have any idea when disharge will be. His output has a lot to do with that. They are not gonna
send us outta here until that's under control. The output is better today, but still way too much.
-- Thank you to those who have signed up for the mailing list. And take a look at the calendar. You are all
welcome to add birthdays, anniversaries or anything else you want. Take care and we love you!--Laurie
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June 15th 2008 12:30pm
All is still going good. All cultures are still negative. They are stopping antibiotics today. One more viral test is
still pending. They decided to scope him this morning. It looked good, but we have to wait until this afternoon
to get the results. I really don't think it will be rejection, but I guess there's always a chance. He's still putting
out a lot of stool. They're watching his labs and replacing everything he is putting out plus any minerals he is
getting low on. They are going to start his feeds back today at a really slow rate to see how he handles it. I
think he will be glad. He's been acting a bit hungry, and I'm not surprised since he hasn't had anything going
into his tummy since Thursday afternoon. They say we will be here until the stool output is back within normal
limits.
--He's back to his silly self. He's figured out to smack himself in the head. He takes both his hands and starts
hitting himself right on top of the head. You should see him. It's really funny. When the docs and nurses come
by for rounds, he really shows off. He'll cock his head to one side and just smile. What a big flirt! And they all
just eat it up.
--I will update later when we get the results. I may not be able to post this right now because the hospital's
internet seems not to be working. I may have to wait until we go back to the RMH.
--Until later, Laurie
-------------10:30pm...We are back at the Ronald McDonald. Levi's biopsy looked good so no rejection. Looks
like just a virus. We'll just have to wait it out. Say a prayer that the output will slow down soon. --Laurie
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June 16th, 2008 12:50pm
The docs just rounded about an hour ago. There hasn't been much change in his stool output. He is losing a
little bit of weight. So until his output is back to normal, they are going to put him back on TPN. They can't
increase his feeds right now because he is putting out so much. His rate for feeds right now is 5ml/hr (20-cal).
They want him back to what he was before he got sick which was 53ml/hr (27-cal). So there is still a way to go
and we can't go up until he stops pooping it all out. The attending said we'd probably be here "a while". Who
knows what that means. It's a term I'm familiar with, but has no definite meaning. Other than his stool output,
he's fine. He's been acting a bit hungry, but the TPN should help him in that dept. They think he still isn't quite
caught up hydration wise so they are giving him a bolus right now.
--His prograf level has been really high and they have held his dose since Saturday night. His range is
supposed to be 10-15 and his was 24. They put him back on the fluconazole (just in case it was a fungal
infection) when he came in and that is more than likely the culprit. Remember last week when they took him
off of it, his level went down too low? Well it just did the opposite. They are checking levels every day and
today it was 11 so they figured out a dose and he'll get that tonight. We'll see if that keeps him in his range.
--I think that's all the changes made for today. I really hated to hear that TPN word again, but I know he needs
it to gain weight and have all the nutrients he needs.
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June 17th, 2008 12:30pm
Levi's stool output is still no better. Actually, it has went up a little bit from yesterday. We're just gonna be
waiting this one out. Who knows for how long. He's acting normal, though, so that is good. Nothing else really
new today. They're just watching his output and replacing what he loses. His weight is still down a bit and they
can't really figure out why. They think he might still be a little dry, but don't see that he looks dry. ??? Who
knows.
-- The child lfe specialist brought him a mat to play on. He spent all afternoon yesterday playing on it. He's got
all sorts of toys they brought him. He's having a good ol' time.
--I emailed the paper in Somerset (Commmonwealth Journal) a few weeks ago and told them about Levi. I got
a response yesterday. She said they thought his story would make a great feature article!!! I am so excited.
She said June has been really busy, but since his birthday is coming up we will do it in July after his birthday.
That will be another milestone he has reached. I hope we are home for his birthday, but it's not looking so
good as of now. I hope his story reaches a lot of people and inspires them to become donors. This is just a
heads up, I'll definitely keep you posted when it will be in the paper.
--Lots of love to you all. Thanks for all the comments. If you've signed up for the mailing list, but haven't been
getting updates yet, it may be because you haven't confirmed it yet. You are sent an email to confirm it. Once
it is confirmed you will be added. Everyone take care and we love you. Hugs and Kisses from Levi.
--Laurie
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June 18th 2008 2:10pm
Levi got himself a massage today! He is such a pampered boy. Stool is still the same. When I came in at 9am,
his output for the previous 4 hours was 190mls and for this past 4 hours he has put out 140, so maybe it is
slowing down finally. Still nowhere near normal. Before he got sick each of those numbers would be high for a
whole day.
--They are going down on his steroid today. I think they would've went down last week if it weren't for him
getting sick. He'll get scoped again in the morning. Not really because they are worried it's rejection, but just
because he was on the schedule already.
--Everything else is staying the same. Just watch him and replace what he loses. They are going to test him
for one other virus from his stool. They said it's a possibility it could be this one causing the problem. I think
they called it Calicivirus. I looked that one up and it causes diarrhea and vomitting in humans and doesn't
usually require medical attention except for immunocomprimised patients (Levi) who would require rehydration
therapy. So it fits, but we'll have to see what the results say. Hopefully his stool output will slow down soon.
He did finally gain about 140 grams since yesterday, which is good because he had consistently been losing
weight everyday.
--He is still hammin' it up with anyone that comes by. The resident said I need to keep a close eye on him
before someone steals him. I couldn't have that. He's my little chipmunk-cheek little man. That reminds me,
the attending MD (GI) said yesterday we needed to get him a strap to help hold his cheeks back. He's been
the attending since Monday and I can already tell he likes to aggravate. He's really nice. Just wait til he's off
these steroids and those cheeks will be no more. Well no more than regular baby fat cheeks. I'll miss them.
--I think that's all for now. Talk to you all later.--Laurie and Levi
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June 19th 2008 12:30pm
Levi just had himself a nap. He was getting tired. He'd been up all morning. He had a scope this morning. It
looked good, but the biopsy won't be back until later today. The other viral test is still pending as of this
morning. He's been a happy flirty little boy. The nutritionist said she was gonna set hime up with a girlfriend.
There is another transplant little girl that looks just like Levi. She'a a bit older, but they said they thought Levi
could handle a older "woman". I've never met her, but she was here after Levi had the transplant and I saw
her when we would pass by her room. The resemblance was uncanny. They could pass for siblings, chubby
cheeks to match.
--Levi got his 3rd tooth yesterday. The 4th is just under the gum. He's already got the 2 on the bottom and
now he'll have 2 on top to match. He'll really be able to bite a chunk out of my nose.
--The resident stopped by this morning before rounds and said his output was down 25% from yesterday, but
at rounds the nutritionist had a different number that was about the same from yesterday. SO.... I don't know
which was right. It seemed a little less yesterday, but I don't know what he put out during the night. He gained
weight again today, so that's good.
--He's been playing on the mat everyday. He sat up all by himself on his knees today. HARD WORK! He
bounced a little and then laid his head down. He's trying to pull up on the railing on the bed, but still isn't
strong enough to get to his feet. He can get to his knees though. Won't be long.
--Love you all. Hugs and all our love--Laurie
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June 20th, 2008 11:40am
Today I am sad. I miss my boys. Today is Jacob's 5th birthday. It's hard being away, but it's really hard being
away on a day that is so important to them...and me. I sent him a video of myself last night telling him happy
birthday and I found a really funny ecard. It had a place you could put in your own picture. I put one of his
faces on the head of this '80's guy break dancing. It was perfect for him since he loves to dance. It was really
funny too. I think he watched it several times and Robin said he was trying to copy the moves in the
background. I wish I was there to see it, I'd have been rolling on the floor. HAPPY BIRTHDAY, MY
JAKE-A-ROO!! Mommy loves you!!
--Back to Levi. Guess what!! Stool output is still the same...BIG surprise, right? We're staying the course we
are on, hopefully it will improve eventually. If he don't get it together he's gonna have a birthday in the
hospital. It's only 11 days from now.We've been here 8 already with not much improvement in the output.
--The biopsy from yesterday showed what could be sign of mild rejection, but it could aslo be from an
infection. Dr Sam seems to think it is infection so they are not going to give him any extra steroids like they
would if it was rejection. They are just watching his prograf level to make sure it stays within range. It has
been on the high side and they are still trying to sort his dose out. His range is 10-15 now and his is running
around 20. So they lowered his dose yesterday, but they don't have the level back today to see if it helped.
It's just good that it's not too low, then I would be more concerned that it was rejection.
--The Calicivirus test is still pending as of today. I'm not sure how long it takes to get back. I do know that only
one lab around does it and they had to send it out to test it.
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June 23rd, 2008 9:50pm
Sorry for no updates this weekend, but I hated to bore you with the same old news. Levi did about the same
all weekend long. They gave him some IVIG yesterday which is antibodies. His was low. Maybe it'll help fight
this thing off.
--From yesterday his output is down slightly. Not a significant amout, but I'm gonna stay optimistic. They also
put him on Immodium and some sort of patch today to help slow the ostomy output. It seemed to help. I
noticed a difference. We'll see if it was a significant amout tomorrow at rounds. They are going to scope him
again in the morning. Since they have no confirmation as to which virus he has, they are still watching closely
to make sure it isn't rejection. The viral test for calicivirus still is not back. It is supposed to be back first thing
in the morning. If it is positive, then he won't get scoped because then they will know for certain that is what is
causing all this. I hope to goodness it isn't rejection because if it is, I forsee a much longer stay. If it is just a
virus that's running its course, then I still have some hope of getting home in the near future. I wanna go
home so bad. It's really wearing on me. I've never been away for this long. It's VERY hard having a long
distance relationship with your whole family. I wouldn't wish it on anyone. Since Levi's been back in the
hospital, it's been even harder because at night I have to come to the RMH and stay all by myself. I don't have
my little cuddle bug to keep me company.
--Everyone take care! ONLY 1 WEEK until Levi's 1st birthday!!! I can still hope to be home, but I'll just be
happy for him to be out of the hospital at this point. Love you guys. Thanks for everything. --Laurie
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June 24th, 2008 1pm
We actually got a bit of good news today! The viral test for calicivirus came back positive. So now we finally
know what's goimg on. They cancelled the scope because there was no need for it since we have a reason
for the increased ostomy output. YEA! They are going to lower his prograf and steroid and put him on an
antibiotic that has some effect on this type of virus. Dr. Sam said he will scope him again next week because
of lowering the steroid he wants to make sure he doesn't reject.
--Some more good news is that his output is down by half. YEA!YEA! I guess those meds they put him on
yesterday helped. Since it is down, they are going to start going up on his feeds to get him back where he
was before he got sick. YEA!YEA!YEA! While increasing his rate on feeds they will DEcrease his rate on TPN.
Whoohoo! Finally some good news. Hopefully this antibiotic will help and he'll continue to improve. Maybe
there is hope in getting out of here by his birthday!
--Love you guys, Laurie
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June 25th, 2008 12pm
We are finally making progress! And I heard the words today "working towards discharge". They said it would
still be a while, but at least we are working towards something other than decreasing his output. His output, by
the way has went down even more today. And he put on 400 grams since yesterday. He's up to 8.9kg which is
19.6 pounds. He weighed 8.58kg on Sunday which is 18.9 pounds. So he's gained almost a pound since
Sunday. It's where he is getting feeds and TPN, but he needs the extra calories to help fight the virus.
--His feeds are still going up, but we aren't at the goal yet.He is only at 17ml/hr. We were at 53 at home, but
that was with a 7 hour window. Since they are continuing them 24 hours then his goal is only 38 for now. We
should get there some time tomorrow. He should be off the TPN tomorrow and also the replacement fluids
should be going bye-bye as well. Once he reaches the goal of feeds then they will go up on the calories and
try to get him his window back. All this should take a few days, so I expect we will probably be here through
the weekend. Long as we are out by Tuesday, I'm happy with that.
--The patch they put him on yesterday was called clonidine. It has had some side effects. Levi slept almost all
day yesterday and he was cranky. I thought he was just feeling bad, but then I remembered the patch and
looked it up. It said it can cause drowsiness. Since they put him on Immodium for the diarrhea too, they are
going to take the patch off and see how his output does without the patch. Hopefully he will do fine and we
won't have to deal with a sleepy Levi. He just wasn't his usual self yesterday. He would only stay awake about
an hour at a time and then he would start getting cranky. When he was awake, his eyes were droopy.
--The antibiotic they put him on is actually more of an antiparasitic. It just keeps the virus from multiplying. It is
called Alinia. I don't know if that's spelled right. Robin looked it up for me and he said a 30 day supply is
$1200. YIKES! Thank goodness for insurance. He will only be on a 1-2 week course so it won't be as
expensive. I think he said it was like $20 for a dose. Medicine is outrageous. I don't even want to know the
total cost of all his other medicines. The Prograf is another expensive medicine and he will be on it forever.
--He got another massage yesterday. Lucky dog. He also had speech, but didn't do as well as normal, but I
think it had to do with his sleepiness. He was a bit more cranky with her than normal. She gave him a wagon
wheel to eat and he went to town on it. He never ate that much of one before. He didn't, however, eat much of
the chicken she brought (only a couple bites). She read him a couple of books and he fell asleep in her lap in
the rocking chair. It was cute.
--I think that is all for today. Later. Love you all.--Laurie
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June 26th, 2008 11:10am
Levi can't stand to keep moving forward. We take 1 step toward going home and he takes 2 steps back. It's
like before transplant and all those infection hospital stays. We would get close to going home and he would
do something to keep us there. I walked in this morning about 9:30 and they said within the last hour he had
started to run a fever. FEVER!! You know what that means. At LEAST 2 more days waiting on cultures. And
they've done every kind of culture there is. Blood, stool, urine. Hopefully it is just from the virus, but it worries
me that it is so long into the infection that he would all of a sudden start to have a fever. He had one the night
I brought him in, but hadn't had one since. The nurse said he was acting extra clingy and when she was
holding him he felt really warm and then they noticed his heart rate was really high. When I came in he was
covered in cold washcloths and ice packs. His temp had gotten to 101.8. I thought it must have been higher
for all the fuss they were doing. They ordered him a cooling blanket, but he's not really liking laying down. So
he's sitting on it. I don't know how well he will be cooled through his butt, but he's not that hot anymore right
now so I'm not going to force him to lay down.
--They have his feeds on hold. They have given him some extra fluid and his temp has come back down. By
the time I got here, he was getting back to himself. His ostomy is still putting out more than the past couple of
days, but I missed rounds so I'm not sure if they are going to put the patch back on or not. I guess he really
was feeling bad and it wasn't the patch causing him to be sleepy. That's the way he would act before he would
run a temp at home. I guess mom's just know these things.
--That's all I got for now. Everyone take care. I guess he wanted to stay for his birthday, the little rat--Laurie
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June 27th, 2008 1:40pm
Well as of the last hour Levi is doing better, but yesterday evening he got a fever again. He started throwing
up his meds so they turned his feeds off. He had a rough night chilling and just looking miserable. Then the
nurse came in and told me his cultures came back positive for gram positive cocci in pairs and clusters. Which
means probably staph or enterococcus, (on top of the virus he has) but we still have to wait to be sure which.
I lost it and started bawling. I don't know where it came from. I guess i was just feeling helpless while he was
laying there chilling and I couldn't do anything. It probably didn't help that we were so close to getting home.
I'm getting wore down. I miss home and normal life. This is how it's going to be for the next year or 2, though. I
need a vacation!
--I stayed with him last night because I hated leaving him when he was feeling so crummy. I didn't sleep that
good, but neither did he. Hopefully he will be feeling better by tonight and I can go back to the RMH tonight.
Robin is supposed to be driving up after work tonight.
--I think he feels a little better today, but definitely not back to normal. He's thrown up 4-5 times already. Well,
tries to throw up. He doesn't have anything in there to throw up. The only time anything comes up is after they
give him meds. I really hope the antibiotics kick in and he starts getting back to normal. It's one thing having to
stay here when he's acting fine, but when he feels miserable, it makes for really long days. Awww, he just fell
asleep. He needs the rest.
--They cathed his 3 times yesterday trying to get urine to do cultures. The docs told the night shift nurse to try
again and I asked if I could refuse. She said yeah. I told her I didn't want him cathed anymore. If he didn't
have bacteria in his urine, he would after all the times they tried. So this morning another nurse (I like her) Her
oldest has spina bifida and she says she has cathed him since he was 2. I told her I didn't care for her trying,
but could they leave it in until they got urine? She said yeah, that they could do that. They have ordered the
stuff and are just waiting on it to come before they try.
--They said at rounds we'll be here through his birthday and they'll have to have him a party. (Darn!) Oh well,
we'll just party when we finally get home.
--Take care,-- Laurie
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June 28th, 2008 10:20am
It's the weekend and not much happens on the weekend. Levi did a lot better yesterday and this morning he
is back to his old self. He's still trying to throw up after meds, but other than that he's doing great. They are
going to start his feeds back, but I don't know if that's such a good idea right now. We'll see how he does. It
would be nice if he tolerates it.
--He hasn't had a fever since yesterday morning. YEA!!
--I've taught him how to blow kisses. He's getting pretty good at it. He only does it when HE wants too, though.
--Guess what Dr. Sam is getting Levi for his birthday! A SCOPE! I told the fellow that was just what Levi
always wanted. Robin and I will have him a little party and maybe he'll feel up to some cake.
--I guess that is all for today. Like I said, they don't make many changes over the weekend. --Laurie

June 08