July 13th, 2008 10:15pm
I bet you all have been wondering if I fell off the end of the earth. Well, it sure seems like it. My laptop crashed on the 29th
and I had no access to a computer. At least not one that I could update with. Robin had to take my computer back to Best
Buy and have them install a new hard drive. It's been torture not having my computer to keep me occupied.
--They decided to pull his PICC after 3 days of positive cultures. He went through several peripheral IVs before he was
able to get a new one. They put a new one in on the 3rd. On the 6th, guess what he did! Pulled it out!!! Well almost. It was
in just enough so they were able to use the same place. They put a new one in on the 7th using a guide wire and just
replacing the catheter.
--He had a good birthday. He got lots of presents, but we didn't do cake because of him gagging. The boys came to visit
and I think Levi was glad to see them. Child life got him a tickle me Elmo, but he's scared of it. He looks at it like it's
possessed. The transplant team got him the shirt he's wearing on the home page. It says "Chicks Dig Me". How cute is
that? And it's the truth.
--His output started getting better, and they planned on discharging him on the 4th, but then his output went back up
again. Urghhh. He got scoped on Sat the 5th, but the biopsies got damaged in the processing so he had to get scoped
again the next day. The biopsies came back-- no rejection.
--He had to get some blood on the 5th. His hemoglobulin got a little low.
--His output is still on the high side, but it's stable so they finally discharged him Wednesday the 9th. We have to do 500ml
of IV fluids overnight so he doesn't get dehydrated. He is scheduled for labs tomorrow and Thursday. He has a clinic
appointment on Thursday and a scope too. We were finally able to get him up to his gaol of feeds, but he doesn't have a
window anymore. Every day since we got out, with the exception of today, he has thrown up at least twice. Today he
hasn't thrown up any. Hopefully we can start working toward getting him his window back. He is still testing positive for the
calicivirus. Must be a hard bug to get rid of. He seems a lot better though, with the exception of his high output. Who
knows when we'll get home now. Maybe we'll get some sort of answer Thursday at clinic.
--Oh yeah, after we had gotten back to the RMH, his Gtube got hung on the stroller and it came out. We had to truck back
over to the hospital. Fortunately, there were still people at clinic and they were able to get it right back in. I thought it
would be a bigger deal than that, but I am glad it wasn't.
--So were are hanging in there and were just going day to day. Sorry if I worried you all with no updates. Hopefully it won't
happen again.
--In case you hadn't noticed, I had to totally redo the main page. Something went wrong when I uploaded the site. Some
other minor things got mixed up. It'll take a while to check it all, but if you see something weird, let me know.
--Love you guys--Laurie
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July 18th, 2008 12:15pm
Sorry I haven't been on in a few days. They boys were here for the past 3 days and I wanted to enjoy my time with them.
We went out and about so I wasn't really here to get on the computer anyway. Tuesday we hung around here for the
morning because Levi had OT and speech. After that was over, we headed out to Walmart to get a few things. I also got
all the boys a haircut, well, not Levi. They needed one REALLY bad. They hadn't had one since March. I hadn't had one
either so I got mine cut as well. I wasn't too impressed. We went to the salon at that Walmart. She didn't cut mine as short
as I wanted in the back and it looks sort of choppy. I'm gonna have to go somewhere else and see if they can get it the
way I like it. None of the boys looked great either. They, honestly need to go to a barber. We told the one cutting
Brandon's hair that he wanted a flat top and she had a dumbfounded look on her face so Robin said just give him a trim.
BUT they really needed one before school. It'll be ok until next haircut time.
--Wednesday, Levi didn't have anything going on so we all went out ALL day. It was exhausting, but we had a very good
time. It was almost normal. We ate at Arby's. I sat Levi in a high chair and he was staring his brother's down while they
were eating. So we gave him a french fry to see what he would do. He looked at Brandon eating and at Jacob eating and
then stuck the fry in his mouth. I was shocked. He needs to be around his brothers more. I think he learns from watching
them. He did the same thing yesterday at Steak and Shake.
--We also went shopping for school shoes, took them to see Wall-E (which was very cute by the way), and let them ride
some rides in a mall. We took them across the bridge over the Ohio River to a park. I got some really good family pictures.
I've created a new photo page with those pictures. Just go to the photo page and at the bottom there is a link for Family
Pictures.
--Yesterday Levi had a scope and clinic. they didn't change much because his output is still high. They said he looked
good and we won't have to go back to clinic for 2 weeks on the 31st. WOW! I think the next scope is in 2 weeks too, but I
haven't heard the results yet so that might change if they find something. The halved his dose of steroid, well they will if
his biopsies are ok. I'll probably hear the results later today.
--We also went to eat and Old Navy for some school clothes. Then we came back to the RMH and they headed home. I
miss them already. I had such a good time and I could tell Levi did. He hasn't really been out that much in his whole life.
You could just see it in his eyes that he was having a blast. He loves being with his brothers no matter what we're doing.
(Yesterday was alos my sister, Jessie's birthday and I think my brother in law, Chad's also. So Happy Birthday guys. We
love you and miss you.
--We are going to try to take them to King's Island on the 30th, but we'll see how Levi is. Robin and I wanted to give them
some sort of a vacation before they start school. They have been wanting to go really bad. I think they'll have a good time,
if we get to go.
--Later, love you all--- Laurie
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July 19th, 2008 11:50am
Just a quick update. I got a call yesterday about the results of Levi's scope biopsies. They came back good! So his next
scope is on the 28th!! I am excited. We finally made it to every other week. Now if we can just get his output under control.
It's improving. It's still about double his normal, but, hey, when he got sick it was about 10 x his normal. It's improved even
since we got discharged last week. It's been hovering around 300mls for the past few days. When we left he was between
400-500mls.
--When she called about the results of his biopsies, she also told me about his lab results. Everything looked good except
his liver numbers were higher than normal. That can mean a sign of rejection. She told me the doc wasn't too concerned
with it at this point, but they would be keeping an eye on it. Usually if there is rejection in multivisceral transplants, they
see it first in the intestine. Since his looked ok, I guess that is why they aren't too concerned.
--He's getting so big. He's over 20 pounds now! He won't lay still. He's all over the bed. He still isn't crawling, but I'm sure it
won't be much longer. He's my big man!
---Laurie
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July 22nd, 2008 9:15pm
We are just hangin' in there. Not much has changed. His labs from yesterday came back that his liver numbers are still
high, but they aren't doing anything other that watching them for now. His output has been the same. Today, though,
seems not to be as much, but I haven't totalled all of it up yet. I pray and pray it gets back to normal. It'll be our only
chance of getting outta here. I think if it gets stable, then maybe, just maybe we can go home. (fingers crossed)
--Robin came yesterday evening and we decided to go see a movie. We went over to Newport on the Levee where they
have a huge cinema. We chose to watch "The Dark Knight". Well it was PACKED. We got there early enough to get a
seat, but before it got started, people were having trouble finding a seat. There was an oddball seat next to Robin and
some girl sat in it. Levi was really good...until about 30 minutes into the movie. He got a little fussy, but nothing that I would
consider a disruption. I assumed he would go to sleep because it was his bedtime and he hadn't really napped all day.
Well, he's never really fussy, but it was hot and he was sleepy so he got cranky. The girl that sat next to Robin kept giving
us dirty looks and saying things like "C'mon, guys!", ""Oh, my gosh!", really rude stuff so ended up having to take Levi out
and we missed the movie. I was so peeved at that girl. I hope she never has kids because she would never have patience
for one. The movie was so loud and there were explosions I'm not sure how she heard him anyways. But she would lean
way forward in her seat like she couldn't hear it. I guess she was afraid she'd miss a bomb going off. It just made me mad.
--Needless to say we went back today. lol. It was the matinee and there were only a few people. It wasn't near as hot and
Levi slept through most of the movie. It was really good. If any of you are thinking of seeing it, 5you should...if you like
BatMan, that is. Robin headed back this evening so we are loners until the weekend.
--Everyone take care. Thanks for letting me vent. Love you all. PS.. my cell messed up on me. I'm getting a replacement
one sent, but it'll probably be a week or so that I don't have my cell phone. The room number here at the RMH is
513-636-2096 if you need to reach me.--Laurie
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July 23rd, 2008 3:15pm
Nothing new today, but his output is down from the day before. I just wanted to share my excitement. It went from 421ml
Monday to 275ml yesterday. i hope it satys there or even drops. It got down to 282 on Wednesday last week, but went
back close to 400ml ever since. It seems good today too, so maybe we're getting there.I hope, I hope, I hope...
---Laurie
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July 25th, 2008 1:10am
It's late, but I can never make myself go to sleep. I always regret it come morning. I have a hard time waking up to do
meds. I'm just a night owl. What can I say?! Levi's usually out by 11:00pm and I just stay up watching TV.
--So I thought I'd update tonight. Levi had labs today. Everything looked good, but his liver numbers are still on the rise. I
asked if (I was talking to the coordinator), if Dr Sam said if he knew why they were high, but she said he didn't say
anything. I can only hope it's from this virus or maybe from the new meds he's been taking since this last admit. Dr Sam
said they weren't going to change anything. So he must not be too concerned. I'm a mom and I can't help to be a little
worried when something is abnormal. His steroid gets lowered tomorrow. We went from twice a day last week to once a
day and tomorrow we go to every other day. I can tell his cheeks are getting slimmer. He gets a scope on Monday...at
8am. I have to be there at 6:30am. Urghhhh. I dread that. I better force myself asleep.
--I forgot to tell you guys, but Levi got another tooth on top a few days ago. He is up to 5 now. YAY! He's so cute when he
grins real big and you can see those choppers. He has also been grinding them. Ewww. It makes my skin crawl when he
does that. But he thinks it's funny when I make faces when he does it.
--Levi's output is getting better. Yesterday it was 300mls and today it was only 223mls!! YAY! We are almost back to
normal. The consistency is also getting thicker. It's not near as watery as it has been. He is still throwing up 2-3 times a
day. I'm not sure if the bug is still in his system, or if it is some of the new meds. I hate to go up on the rate, if he's not
keeping down the rate he's at now. So we'll see what they want to do on Thursday at clinic. It may help to go up if he gets
a window.
--Love you guys---Laurie
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July 28th, 2008 9:35am
Shhhhhh... Don't tell. We snuck home over the weekend. We (well, I) really wanted to go home. It was a lot of driving for
Robin, but he gave in pretty easily. He knew I needed it. It was sooooo nice. We even took Levi to church yesterday. Boy,
everyone was shocked to see us. I mean EVERYONE. We didn't tell anyone we were coming. We just decided to do it
Saturday morning. I'm sorry to those we didn't get to see, but it was a short stay and it's hard to see everyone you want to.
I am glad to see who we saw, though. It did me a lot of good. I was getting very homesick. It had been about 2 months
since I'd been home. I can't complain, though. There are families here that live much farther than us and they have been
here much longer than us. They don't have the option to sneak away if they want. So I am grateful we are blessed.
--Levi had his scope this morning...EARLY. We had to be there at 6:30am..ughhh. I hadn't had to be up and out that
early in a very long time. Dr Sam said everything looked good. He said his blood pressure has been down and we may be
able to lower or even get rid of his BP medicine. We should also be getting rid of the steroid soon too. And the medicine
he has been taking for the Calicivirus should be going as soon as we get a negative result. They tested him the week
before last, but something happened and the results were mixed up or something. They will probably test him again this
week. He has clinic Thursday. So getting rid of 3 meds soon sounds good to me.
--His output is staying down and even going down slightly each day. YAY!!
--Dr Sam also said maybe one more scope (which will probably be in 2 weeks), and then he will only have to get them
when he is sick (and we're crossing our fingers that he won't get sick). i am hoping in clinic this week that we will get an
idea as when we might get to come home. With scopes going to only when he is sick, maybe the light at the end of the
tunnel is getting really close. I would probably cry with joy if they tell us we can go home. I'm keeping my fingers crossed.
You never know.
--Everyone take care. We love you. Hope to see you sooner rather than later. ---Laurie and Levi
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July 31st, 2008 3:40pm
Put your party hats on!! Levi's coming home!!! For good, not a weekend sneak-away! Our coordinator is working on
getting things set up so it may be as late as Monday or Tuesday, but she just called and said she may be able to get it
ready by this weekend. Whoo-Hoo!!! I am soooo excited. I would love to be home by Tuesday. It's Jacob and Brandon's
first day of school and it will be Jacob's 1st day of Kindergarten. I'd hate to miss that.
--Let me back up to yesterday. The boys had a blast at Kings Island. They were exhausted by the time we left. Levi just
took it all in. He really had fun. He even rode a couple rides. lol. We stayed mainly in the kiddie section, but that was more
than enough rides for them to ride.
--OK, other than going home let me mention some other changes they made at clinic today. We are lowering his IV fluids
at night from 500ml to 400ml. We are decreasing his Prevacid from twice a day to once a day. We are going up on his
feeds from 40ml/hr to 44ml/hr and then giving him a 2 hour window. We are STOPPING the prednisolone (steroid). YAY!
He weighed 20 pounds and 11 ounces. His height to weight percent was 97%. That means he's short and chunky! Dr Sam
said that he may start to have a growth spurt (in height) now that the steroid has stopped. His output is running between
200-300ml a day. Much, much better. His blood pressure is still a little too high to get rid of the BP med, but maybe it won't
be too much longer.
--He will have another scope on Thursday next week and if it looks good, then no more unless he's sick!!
--Dr. Sam also told us he thought it would be best for Levi all around to reverse the ostomy before a year. (We were told
in the beginning he would have it for a year) He didn't say how much sooner, but if we're not doing scopes, then he
wouldn't need the ostomy. That would be great. We just gotta keep him from getting another nasty bug. He also said that
if he did pick up a virus or something that caused him to have watery stools, the large intestine would be able to absorb it
and it would help him a lot.
-- His labs were also changed from twice a week to only once a week. And Dr Sam said that once his labs are able to be
every other week, we can probably get rid of the PICC. (As long as he's not requiring the extra fluid.) He said that would
decrease his chances of picking up a line infection and getting sick that way. That would mean he would have to get
poked to get the labs, but I'm sure he would love to be rid of this PICC. He scratches at it all day. If it's gone, then he's got
much less chance of getting an infection in his blood.
--If he got rid of the PICC and the ostomy, all he'll have left is the Gtube. Maybe once at home we can get him eating and
we can lose that too. YAY! YAY!! YAY! I still have a feeling that it will be a while before he's eating enough to keep him
gaining weight. BUT if we could get it enough that he could just have feeds at night and eat during the day, I would be
totollay ok with that. He would be free during the day!!!
--I've got a smile that won't go away! I'm sure you can tell. Can't wait to see you all again. I will start planning his party as
soon as we get home. Keep checking in and I'll let you know a date when I figure one out. Love you and thank you all for
helping me through this. God Bless you all!
--See you soon!--Laurie and Levi
-----------------------------------------------------------------------------
I bet you all have been wondering if I fell off the end of the earth. Well, it sure seems like it. My laptop crashed on the 29th
and I had no access to a computer. At least not one that I could update with. Robin had to take my computer back to Best
Buy and have them install a new hard drive. It's been torture not having my computer to keep me occupied.
--They decided to pull his PICC after 3 days of positive cultures. He went through several peripheral IVs before he was
able to get a new one. They put a new one in on the 3rd. On the 6th, guess what he did! Pulled it out!!! Well almost. It was
in just enough so they were able to use the same place. They put a new one in on the 7th using a guide wire and just
replacing the catheter.
--He had a good birthday. He got lots of presents, but we didn't do cake because of him gagging. The boys came to visit
and I think Levi was glad to see them. Child life got him a tickle me Elmo, but he's scared of it. He looks at it like it's
possessed. The transplant team got him the shirt he's wearing on the home page. It says "Chicks Dig Me". How cute is
that? And it's the truth.
--His output started getting better, and they planned on discharging him on the 4th, but then his output went back up
again. Urghhh. He got scoped on Sat the 5th, but the biopsies got damaged in the processing so he had to get scoped
again the next day. The biopsies came back-- no rejection.
--He had to get some blood on the 5th. His hemoglobulin got a little low.
--His output is still on the high side, but it's stable so they finally discharged him Wednesday the 9th. We have to do 500ml
of IV fluids overnight so he doesn't get dehydrated. He is scheduled for labs tomorrow and Thursday. He has a clinic
appointment on Thursday and a scope too. We were finally able to get him up to his gaol of feeds, but he doesn't have a
window anymore. Every day since we got out, with the exception of today, he has thrown up at least twice. Today he
hasn't thrown up any. Hopefully we can start working toward getting him his window back. He is still testing positive for the
calicivirus. Must be a hard bug to get rid of. He seems a lot better though, with the exception of his high output. Who
knows when we'll get home now. Maybe we'll get some sort of answer Thursday at clinic.
--Oh yeah, after we had gotten back to the RMH, his Gtube got hung on the stroller and it came out. We had to truck back
over to the hospital. Fortunately, there were still people at clinic and they were able to get it right back in. I thought it
would be a bigger deal than that, but I am glad it wasn't.
--So were are hanging in there and were just going day to day. Sorry if I worried you all with no updates. Hopefully it won't
happen again.
--In case you hadn't noticed, I had to totally redo the main page. Something went wrong when I uploaded the site. Some
other minor things got mixed up. It'll take a while to check it all, but if you see something weird, let me know.
--Love you guys--Laurie
---------------------------------------------------------------------------
July 18th, 2008 12:15pm
Sorry I haven't been on in a few days. They boys were here for the past 3 days and I wanted to enjoy my time with them.
We went out and about so I wasn't really here to get on the computer anyway. Tuesday we hung around here for the
morning because Levi had OT and speech. After that was over, we headed out to Walmart to get a few things. I also got
all the boys a haircut, well, not Levi. They needed one REALLY bad. They hadn't had one since March. I hadn't had one
either so I got mine cut as well. I wasn't too impressed. We went to the salon at that Walmart. She didn't cut mine as short
as I wanted in the back and it looks sort of choppy. I'm gonna have to go somewhere else and see if they can get it the
way I like it. None of the boys looked great either. They, honestly need to go to a barber. We told the one cutting
Brandon's hair that he wanted a flat top and she had a dumbfounded look on her face so Robin said just give him a trim.
BUT they really needed one before school. It'll be ok until next haircut time.
--Wednesday, Levi didn't have anything going on so we all went out ALL day. It was exhausting, but we had a very good
time. It was almost normal. We ate at Arby's. I sat Levi in a high chair and he was staring his brother's down while they
were eating. So we gave him a french fry to see what he would do. He looked at Brandon eating and at Jacob eating and
then stuck the fry in his mouth. I was shocked. He needs to be around his brothers more. I think he learns from watching
them. He did the same thing yesterday at Steak and Shake.
--We also went shopping for school shoes, took them to see Wall-E (which was very cute by the way), and let them ride
some rides in a mall. We took them across the bridge over the Ohio River to a park. I got some really good family pictures.
I've created a new photo page with those pictures. Just go to the photo page and at the bottom there is a link for Family
Pictures.
--Yesterday Levi had a scope and clinic. they didn't change much because his output is still high. They said he looked
good and we won't have to go back to clinic for 2 weeks on the 31st. WOW! I think the next scope is in 2 weeks too, but I
haven't heard the results yet so that might change if they find something. The halved his dose of steroid, well they will if
his biopsies are ok. I'll probably hear the results later today.
--We also went to eat and Old Navy for some school clothes. Then we came back to the RMH and they headed home. I
miss them already. I had such a good time and I could tell Levi did. He hasn't really been out that much in his whole life.
You could just see it in his eyes that he was having a blast. He loves being with his brothers no matter what we're doing.
(Yesterday was alos my sister, Jessie's birthday and I think my brother in law, Chad's also. So Happy Birthday guys. We
love you and miss you.
--We are going to try to take them to King's Island on the 30th, but we'll see how Levi is. Robin and I wanted to give them
some sort of a vacation before they start school. They have been wanting to go really bad. I think they'll have a good time,
if we get to go.
--Later, love you all--- Laurie
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July 19th, 2008 11:50am
Just a quick update. I got a call yesterday about the results of Levi's scope biopsies. They came back good! So his next
scope is on the 28th!! I am excited. We finally made it to every other week. Now if we can just get his output under control.
It's improving. It's still about double his normal, but, hey, when he got sick it was about 10 x his normal. It's improved even
since we got discharged last week. It's been hovering around 300mls for the past few days. When we left he was between
400-500mls.
--When she called about the results of his biopsies, she also told me about his lab results. Everything looked good except
his liver numbers were higher than normal. That can mean a sign of rejection. She told me the doc wasn't too concerned
with it at this point, but they would be keeping an eye on it. Usually if there is rejection in multivisceral transplants, they
see it first in the intestine. Since his looked ok, I guess that is why they aren't too concerned.
--He's getting so big. He's over 20 pounds now! He won't lay still. He's all over the bed. He still isn't crawling, but I'm sure it
won't be much longer. He's my big man!
---Laurie
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July 22nd, 2008 9:15pm
We are just hangin' in there. Not much has changed. His labs from yesterday came back that his liver numbers are still
high, but they aren't doing anything other that watching them for now. His output has been the same. Today, though,
seems not to be as much, but I haven't totalled all of it up yet. I pray and pray it gets back to normal. It'll be our only
chance of getting outta here. I think if it gets stable, then maybe, just maybe we can go home. (fingers crossed)
--Robin came yesterday evening and we decided to go see a movie. We went over to Newport on the Levee where they
have a huge cinema. We chose to watch "The Dark Knight". Well it was PACKED. We got there early enough to get a
seat, but before it got started, people were having trouble finding a seat. There was an oddball seat next to Robin and
some girl sat in it. Levi was really good...until about 30 minutes into the movie. He got a little fussy, but nothing that I would
consider a disruption. I assumed he would go to sleep because it was his bedtime and he hadn't really napped all day.
Well, he's never really fussy, but it was hot and he was sleepy so he got cranky. The girl that sat next to Robin kept giving
us dirty looks and saying things like "C'mon, guys!", ""Oh, my gosh!", really rude stuff so ended up having to take Levi out
and we missed the movie. I was so peeved at that girl. I hope she never has kids because she would never have patience
for one. The movie was so loud and there were explosions I'm not sure how she heard him anyways. But she would lean
way forward in her seat like she couldn't hear it. I guess she was afraid she'd miss a bomb going off. It just made me mad.
--Needless to say we went back today. lol. It was the matinee and there were only a few people. It wasn't near as hot and
Levi slept through most of the movie. It was really good. If any of you are thinking of seeing it, 5you should...if you like
BatMan, that is. Robin headed back this evening so we are loners until the weekend.
--Everyone take care. Thanks for letting me vent. Love you all. PS.. my cell messed up on me. I'm getting a replacement
one sent, but it'll probably be a week or so that I don't have my cell phone. The room number here at the RMH is
513-636-2096 if you need to reach me.--Laurie
----------------------------------------------------------------------------
July 23rd, 2008 3:15pm
Nothing new today, but his output is down from the day before. I just wanted to share my excitement. It went from 421ml
Monday to 275ml yesterday. i hope it satys there or even drops. It got down to 282 on Wednesday last week, but went
back close to 400ml ever since. It seems good today too, so maybe we're getting there.I hope, I hope, I hope...
---Laurie
------------------------------------------------------------------------------
July 25th, 2008 1:10am
It's late, but I can never make myself go to sleep. I always regret it come morning. I have a hard time waking up to do
meds. I'm just a night owl. What can I say?! Levi's usually out by 11:00pm and I just stay up watching TV.
--So I thought I'd update tonight. Levi had labs today. Everything looked good, but his liver numbers are still on the rise. I
asked if (I was talking to the coordinator), if Dr Sam said if he knew why they were high, but she said he didn't say
anything. I can only hope it's from this virus or maybe from the new meds he's been taking since this last admit. Dr Sam
said they weren't going to change anything. So he must not be too concerned. I'm a mom and I can't help to be a little
worried when something is abnormal. His steroid gets lowered tomorrow. We went from twice a day last week to once a
day and tomorrow we go to every other day. I can tell his cheeks are getting slimmer. He gets a scope on Monday...at
8am. I have to be there at 6:30am. Urghhhh. I dread that. I better force myself asleep.
--I forgot to tell you guys, but Levi got another tooth on top a few days ago. He is up to 5 now. YAY! He's so cute when he
grins real big and you can see those choppers. He has also been grinding them. Ewww. It makes my skin crawl when he
does that. But he thinks it's funny when I make faces when he does it.
--Levi's output is getting better. Yesterday it was 300mls and today it was only 223mls!! YAY! We are almost back to
normal. The consistency is also getting thicker. It's not near as watery as it has been. He is still throwing up 2-3 times a
day. I'm not sure if the bug is still in his system, or if it is some of the new meds. I hate to go up on the rate, if he's not
keeping down the rate he's at now. So we'll see what they want to do on Thursday at clinic. It may help to go up if he gets
a window.
--Love you guys---Laurie
----------------------------------------------------------------------------
July 28th, 2008 9:35am
Shhhhhh... Don't tell. We snuck home over the weekend. We (well, I) really wanted to go home. It was a lot of driving for
Robin, but he gave in pretty easily. He knew I needed it. It was sooooo nice. We even took Levi to church yesterday. Boy,
everyone was shocked to see us. I mean EVERYONE. We didn't tell anyone we were coming. We just decided to do it
Saturday morning. I'm sorry to those we didn't get to see, but it was a short stay and it's hard to see everyone you want to.
I am glad to see who we saw, though. It did me a lot of good. I was getting very homesick. It had been about 2 months
since I'd been home. I can't complain, though. There are families here that live much farther than us and they have been
here much longer than us. They don't have the option to sneak away if they want. So I am grateful we are blessed.
--Levi had his scope this morning...EARLY. We had to be there at 6:30am..ughhh. I hadn't had to be up and out that
early in a very long time. Dr Sam said everything looked good. He said his blood pressure has been down and we may be
able to lower or even get rid of his BP medicine. We should also be getting rid of the steroid soon too. And the medicine
he has been taking for the Calicivirus should be going as soon as we get a negative result. They tested him the week
before last, but something happened and the results were mixed up or something. They will probably test him again this
week. He has clinic Thursday. So getting rid of 3 meds soon sounds good to me.
--His output is staying down and even going down slightly each day. YAY!!
--Dr Sam also said maybe one more scope (which will probably be in 2 weeks), and then he will only have to get them
when he is sick (and we're crossing our fingers that he won't get sick). i am hoping in clinic this week that we will get an
idea as when we might get to come home. With scopes going to only when he is sick, maybe the light at the end of the
tunnel is getting really close. I would probably cry with joy if they tell us we can go home. I'm keeping my fingers crossed.
You never know.
--Everyone take care. We love you. Hope to see you sooner rather than later. ---Laurie and Levi
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July 31st, 2008 3:40pm
Put your party hats on!! Levi's coming home!!! For good, not a weekend sneak-away! Our coordinator is working on
getting things set up so it may be as late as Monday or Tuesday, but she just called and said she may be able to get it
ready by this weekend. Whoo-Hoo!!! I am soooo excited. I would love to be home by Tuesday. It's Jacob and Brandon's
first day of school and it will be Jacob's 1st day of Kindergarten. I'd hate to miss that.
--Let me back up to yesterday. The boys had a blast at Kings Island. They were exhausted by the time we left. Levi just
took it all in. He really had fun. He even rode a couple rides. lol. We stayed mainly in the kiddie section, but that was more
than enough rides for them to ride.
--OK, other than going home let me mention some other changes they made at clinic today. We are lowering his IV fluids
at night from 500ml to 400ml. We are decreasing his Prevacid from twice a day to once a day. We are going up on his
feeds from 40ml/hr to 44ml/hr and then giving him a 2 hour window. We are STOPPING the prednisolone (steroid). YAY!
He weighed 20 pounds and 11 ounces. His height to weight percent was 97%. That means he's short and chunky! Dr Sam
said that he may start to have a growth spurt (in height) now that the steroid has stopped. His output is running between
200-300ml a day. Much, much better. His blood pressure is still a little too high to get rid of the BP med, but maybe it won't
be too much longer.
--He will have another scope on Thursday next week and if it looks good, then no more unless he's sick!!
--Dr. Sam also told us he thought it would be best for Levi all around to reverse the ostomy before a year. (We were told
in the beginning he would have it for a year) He didn't say how much sooner, but if we're not doing scopes, then he
wouldn't need the ostomy. That would be great. We just gotta keep him from getting another nasty bug. He also said that
if he did pick up a virus or something that caused him to have watery stools, the large intestine would be able to absorb it
and it would help him a lot.
-- His labs were also changed from twice a week to only once a week. And Dr Sam said that once his labs are able to be
every other week, we can probably get rid of the PICC. (As long as he's not requiring the extra fluid.) He said that would
decrease his chances of picking up a line infection and getting sick that way. That would mean he would have to get
poked to get the labs, but I'm sure he would love to be rid of this PICC. He scratches at it all day. If it's gone, then he's got
much less chance of getting an infection in his blood.
--If he got rid of the PICC and the ostomy, all he'll have left is the Gtube. Maybe once at home we can get him eating and
we can lose that too. YAY! YAY!! YAY! I still have a feeling that it will be a while before he's eating enough to keep him
gaining weight. BUT if we could get it enough that he could just have feeds at night and eat during the day, I would be
totollay ok with that. He would be free during the day!!!
--I've got a smile that won't go away! I'm sure you can tell. Can't wait to see you all again. I will start planning his party as
soon as we get home. Keep checking in and I'll let you know a date when I figure one out. Love you and thank you all for
helping me through this. God Bless you all!
--See you soon!--Laurie and Levi
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