October 4th, 2008
Not much going on, but I figured I'd better update anyway. I took Jacob to see an orthopedic doctor Thursday about
his arm. They took more xrays and didn't see a break. The doc said that sometimes when they see swelling and stuff
right after an injury, the break doesn't show up on an xray for a week or two. Fortunately, Jacob's wasn't broken. He
hasn't acted like it hurt since that night he fell so I wasn't too worried about it, but you never know with kids.
--Brandon turned 9 on Friday. We took him and the other boys to the movies and then to Eubank Park (the pics at
the top are at the park). Then we came home for cake. It was a very good day.
--Today was my nephew, Lukas' 1st birthday party. It was a beautiful day to have a party. The boys had a good time
playing while they were there.
--Levi is still doing great. He had a great time playing outside at the park. Thanks for checking in. Please sign the
guestbook to let us know you were here. We love ya.
--Levi has labs (just to recheck the renal panel) on Monday. I'll let you know the results when I get them. Later--Laurie
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October 11th, 2008
Sorry I forgot to update when I got his lab results this week. His potassium was still on the high side so we increased
his dose of the new medicine they started him on (Fludrocort/Florinex). Instead of giving him 1/2 a tablet, now I give
him a whole tablet. Hopefully this will help and he won't keep having to get the renal panel repeated every week and
getting stuck so much. He has all his labs done on Monday --Prograf, renal, liver, the whole works. Then he has his
clinic appointment on Wednesday. As lazy as I have been, it will probably be after his clinic appointment before I
update again. I hope to get some good news about the ostomy. I would LOVE it if they were ready to reverse it. It is
getting more and more difficult to change the bags. His skin is starting to break down from all the bag changes. I
have bee having to change it once a day. They are suppose to look at it Wednesday (they have special nurses that
only deal with ostomy care) and see if maybe he is ready for a new size. Maybe that is the reason his bags aren't
staying on as long. I just wish for some improvement because it is like torturing him when I change it. I hate being the
"bad guy".
--He's able to stand up in the middle of the floor now with no help. YAY!He can stand alone for several seconds. Still
not able to get him to walk though. I don't think it will be long. He's getting braver. I think he's getting taller too.
--I had a visit from 1st steps. They are the speech and PT people that are here in Somerset. She just came out to do
the initial paperwork. Someone should be coming out in a week or so to do his evaluation. It should be just for
speech to help him eat more, but they may recommend physical therapy or occupational therapy as well. I really
don't think he needs PT. He is behind for his age, but he's progressing normally in my opinion. We will just have to
wait and see what they say.
--I guess that is all for today. We love you all. Take care. Our annual Homecoming at church is tomorrow, you should
come out and join us. Hope to see you there. Let me know if you need directions. 606-219-7826--Laurie
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October 13th, 2008
Just wanted to update about Levi real quick. He started a fever Saturday night (not really high, but warm) then
Sunday morning it was high enough to give Cincinnati a call. They said they wanted me to take him to the ER in
Somerset to check labs and if they were ok we could go home. Well after 7 hours in the Somerset ER we ended up
taking an ambulance ride to Cincinnati anyway. He is acting fine except for the fever. They have done the usual
workup. Labs, blood and urine cultures, chest xray. The bloodwork has came back ok. Cultures take 48 hours so we
will be here until that time frame is up at least, and that is if the cultures stay negative. If it turns positive, then we are
talking at least a week to 10 days. Cross your fingers that won't happen.
--He has been poked so much and aggravated by everyone since yesterday that as soon as someone suspicious
comes in he starts crying. He has an IV to get the antibiotic and they gave him some fluids yesterday at the ER.
When we got up here, I went down to get a bite to eat and by the time I got back, he'd pulled his IV out. So he had to
get stuck again last night to get a new IV. He's been cathed twice and they had to poke his finger this morning to get
a Prograf level and they just came and poked him again to get more blood cultures. Untill they get a negative then
they are going to do cultures everyday. He will have labs again in the morning, so all the veins that were healing are
going to be shot. I feel so bad for him. He is getting older and he knows more of what's going on, but not enough to
understand why.
--My other boys took it really hard that I had to leave. Worse than anytime before. I think it is finally wearing thin on
them. they are ready for this to be over. I told Brandon that I would call when I got up here last night and when I got
to the ER here, there was no signal on my cell. When they took us to our room I had several messages from him
when my signal came back. Robin told me Brandon was worried to death that the ambulance had wrecked because
he knew I should've been here. He was crying and all worked up. Jacob was pretty upset as well. Toby was ok, oddly
enough. Hopefully this will be a short stay so I can get back to them.
--The surgeon stopped by earlier and said there was talk about reversing his ostomy sooner than later (we were
originally told he would have it about a year--he's 7 months post transplant) since he was doing so well. I'm not sure
if the "sooner" meant this admission or not. He kinda caught me off guard. I thought he was just peeking in to say hi.
He said they would have to do some studies like a barium enema and a scope to make sure everything was ok. I am
hoping to get rid of it soon. I would hate to be gone longer, but I would love to be rid of that thing and I'm sure Levi
would be too.
--Sorry so long. We love you. Say a prayer for us that this is just a fever and nothing more....a small virus at the most
that will pass on its own.----Laurie
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October 14th, 2008
I don't want to jinx our good luck too early, but I wanted to let you guys know what was going on. They said at rounds
that we could go home this afternoon after the cultures from Somerset had been negative for 48 hours. So far they
are. We have to go 'til around 3 and then he has an IV med due around 5. After the med, they say we can go. They
said they felt ok with him going home because he is acting so good. In fact the attending docs were very impressed
at how well he's done after transplant compared to the others. They said if one of the cultures they drew here
happened to come back positive after we got home, then it wouldn't be a big deal to come back. He hasn't had a
fever since last night. So all is well. He lost his IV early this morning so he had to get a new one about 6am. He's
been stuck so many times since we've been here. I was gonna ask for another PICC if the cultures had come back
positive. Just tired of him getting stuck. He has no more veins to choose from for IV access. Thankfully they haven't
messed with the AC too much and hopefully they won't have any trouble getting labs at home.
--He has to get labs again on Monday. He was supposed to be up here for clinic tomorrow, but instead we won't have
to come back for 2 weeks because he was already looked over pretty well. The ostomy nurse is also supposed to be
by to check him to see if he may need a larger size. So that's the plan. Hopefully we'll be home before 8pm and I
won't miss the new "House" episode. Thanks for the prayers. I know they work. Love you guys. Leave me a
message, I sure do get bored here.--Laurie
**** Just as I was starting to publish the site the nurse checked his temp. He was 101.3. Hopefully this won''t screw
with things. If it is a virus, he may run a fever for a few days. I wouldn't think they'd want to keep him since the
cultures are negative. We'll see.
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October 16th, 2008
We made it home Tuesday evening after all. They didn't seem too worried about that last fever he had. We didn't
even give him any tylenol for it. It went away on its own. We made it home about 9:30pm. He has an appointment to
go to clinic on the 29th at 2pm and he has labs again on Monday. Pray they are able to find a vein that will draw
blood. He has been doing good since we been home. No fever since Tuesday.
--I got a call today from 1st Steps. She is going to come out Monday at 1:00pm to evaluate him for speech therapy.
Hopefully we will be able to start that soon.
--You'll never guess what I found in Levi's stool yesterday. I went to empty it yesterday morning and I saw a black clot
looking thing floating around. It was smaller than a dime and really stood out because his stool is a dark yellow color.
Well I thought it might have been some type of clot or he'd stuck who knows what in his mouth. So I took it to the sink
to rinse it with water to see if I could tell what it was. Most of it broke apart--I'm assuming it was a combination of stool
and blood. BUT what was left was weird. It was a tiny little stitch. I'm thinking, where in the world did that come from. I
got worried and called Robin and he said I should call Cincy just to be sure. So I did and she called me back a few
hours later after speaking with the surgeon. He said it was nothing to worry about. I'll take his word for it, but
nevertheless it was an odd thing to find. lol
--Everyone take care. Thanks for your prayers, they always help. A friend I worked with at Walmart asked if I would
say a prayer request for someone her son knows. There is a little boy that has a muscle disease and they have only
given him 2 years to live. Please say a prayer for the family and especially that little one. I forgot the name, but God
knows who it is. Thanks--Love you.--Laurie
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October 22nd, 2008
Levi had labs Monday. He got poked 4 times, by 3 people and we gave up. I called his coordinator to see what they
wanted to do about no labs. I told her that I thought he needed another PICC because his veins were just shot from
last week being in the hospital. I asked if she thought we could wait until next week when he has his appointment.
She was concerned about the potassium, but said she'd check with Dr Sam anyway. It's breakin' my heart to watch
him get stuck over and over again. He is getting old enough now that he starts screaming as soon as I sit him on the
exam table. I feel so bad for him. I hate for him to get another PICC, but it may be the best thing. Dr Sam is outta the
country so she said she'd call me back when she heard from him.
--Yesterday she called and said that Dr Sam asked if we could try one more time to get labs Wed (today). If the labs
looked good then she said Dr. Sam was ok waiting a month before he would have to have more. If he had a month
with no labs, that would give his veins time to heal. So I took him this morning. There was a different guy working
today that is really good and he got it the 1st stick. I was so glad.
--The coordinator called about 5pm and said that his potassium was still high. A little lower than when he was in the
hospital last week. She checked with the attending doc and they said that may just be where his is going to stay. The
nutritionist is going to check into his formula to see if it has a lot of potassium in itwhich could be causing the
problem. They may need to adjust his formula. Also his liver numbers had jumped up qiite a bit from last week. She
said she wasn't sure what that means and is still waiting to hear back from Dr. Sam. She said he would probably
respond to her email tonight and she would call me tomorrow to tell me what he said. So you can probably guess that
those labs weren't good enough to wait a month to get any more. So we will probably be getting a PICC. I think it will
be for the best for him as bad as I hate it. I am conflicted with the PICC. I know it would be less sticks for him, but it
also increases his risk for infection because he has a direct line into his blood stream. I have to constantly watch him
because he scratches at the tape because it bothers him 24 hours a day. If only he wasn't such a hard stick. I have
mixed feelings about it.
--Another bummer, Brandon, Jacob, and Toby all three were sick yesterday. I kept Jacob home from school because
he said his belly was hurting. He threw up a couple times yesterday and slept a lot. I took Brandon to school, but got
a call from the school nurse that he was sick so I had to go pick him up. He said he threw up a couple times at
school. And Toby slept all evening and started running a fever last night and threw up just before we went to bed.
They all seem fine this morning so I hope it's passed and passed over Levi without making him sick.
--I guess that's it for now. I'll update as soon as I hear from Julie (the coordinator) tomorrow. Love you all! --Laurie
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October 24th, 2008
Julie called me Wednesday and said that Dr Sam had a couple things for us to try to help with the labs. She said for
me to give him and extra 200mls of water. Also she told me to stop the baby aspirin. So yesterday I did that and he
had to get more labs this morning. Well his BUN dropped a little, but his potassium was still high. Actually a little
higher than Wednesday. It was 6.0 today it was 5.9 Wed. So she told me to still continue giving him the extra 200mls
of water until he gets labs again. She didn't tell me when. I've emailed her so I expect to hear back from her later.
She also said to lower his Prograf dose from 0.5mg to 0.2mg. His level has been running on the high side of his
target range. His range is 7-12 and his was 12 something from Wednesday. This may help the kidneys (or the
potassium issue). That was also the reason for stopping the baby aspirin.
--The same guy stuck him again today. 1st stick again. I guess he's just really good at what he does. I talked to Julie
about my self debate about the PICC and she said she'd schedule it anyway and we would play it by ear and it would
kinda be left up to me ad the doc if it's something that he really needs. If this guy continues to be able to get him on
the 1st stick, I think I'd rather continue that route and forget the PICC for now. Well, I gotta go pick up the boys from
school. Just wanted to update real quick. Thanks. Love you all. --Laurie
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October 27th, 2008
Looks like we will be getting the PICC. Levi's ostomy output went up by about 100mls since I've been giving the extra
water. They don't seem to think the water would cause his output to increase, though. I gave him 300mls of water
instead of 200 over the weekend because they were worried he would get dehydrated. He is tolerating it ok. He had
to get labs again this morning and they wanted to also check his stool and urine. His labs showed he was still a little
dry even with all the extra water. They want me to give him an additional 150mls of water for a total of 450mls today.
Then we have to be in Cincinnati at 9 in the morning to get an IV started to get IV fluids and probably a PICC later
that day. I don't know if they'll want to admit him or not. My guess is that they will. They said it would depend on his
labs tomorrow and how his output is. It hasn't increased anymore, just hovering about 100mls more than normal.
Julie said they may want to scope him because of the increased output. I am supposed to go back to the other dose
of 0.5mg 2 x a day since the output is back up.
--The guy that stuck him last time doesn't work on Mon or Tues. He got stuck 4 times again today. They were able to
get enough blood to do all of the labs they needed except for his prograf level, but since we are going tomorrow they
weren't too worried about that one. Poor baby. I guess the PICC is for the best until his labs get straightened out. I
sure do hate it though. I'll try to update again sometime tomorrow evening either we will be admitted or we will be
back home. More than likely they will admit him. He was supposed to have clinic Wednesday so I don't know if we'll
have to come back if they send us home or not. That's kinda why I was thinking they would keep him. I'll talk to you
all later. Love you. *HUGS*--Laurie
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October 29th, 2008
Poor, poor little Levi. He looks like a pin cushion. We got here about 930am and went to clinic. They thought it would
be best for him to be seen through the ER...get evaluated and get an IV and some IV fluids. I knew more than likely
that he was going to be admitted and they told me that as well. They stuck him 4 times trying to get labs and an IV
started, but where he was so dehydrated and he has few veins to choose from anyway, they didn't have any success
with it. They wanted fluids in him quicker than he was scheduled for the PICC is the reason that they just didn't wait,
but that's what they ended up doing anyway. We just gave him some pedialyte through his Gtube to help until he
could get the IV fluids. Well he got stuck twice for the PICC. Even after the second stick they got it in, but we were
very afraid it wasn't going to go in all the way. There was a curve in the vein and the catheter would just bend when it
got to it. Finally, with a little praying and help from the radiologist, they were able to get it in. He had to use a stiffer
guide wire to guide it past the curve. Before they were done, I started crying. I just was getting so tired of him getting
stuck. They did use a numbing medicine for the PICC, but it can still hurt. He was tied down for about an hour and I
know it was hurting him. I am so glad they got it in. I am gonna guard that thing with my life.
--So after 6-7 hours in the ER we were finally able to get to our room. They wanted him stable before we came up
here and he couldn't get stable until he got hydrated and he couldn't get hydrated until he got IV fluids and he
couldn't get IV fluids without an IV. I was sooo exhausted. We got to the room at about 7pm---I had to pee, I was
starved, I was going on little sleep and I had a very bad headache from my sinuses. What a long day! I'm so glad it's
over. He didn't sleep too well last night. I think he missed his daddy (he sleeps next to Robin every night). --well that
and he was probably having nightmares of being used as a pin cushion. He's resting well now. He woke up when
they did the scope at 8am and has been up since. It's 12 now. He should sleep a while. I should sleep while he
sleeps, but I'm waiting on them to bring lunch. Hopefully he'll wait til after I eat and let me get a little nap in.
--They filled him full of fluids and he is much better today. They scoped him this morning--which looked good, but the
biopsies they took won't be back until later this afternoon. They've done all kinds of stool, urine and blood tests. This
morning the stool came back positive for c diff which is a bacteria that grows naturally in the intestine. It has just
become overgrown. They said it is a very common bacterial infection that they see in kids like him. They've started
him on Flagyl (an antibiotic) which will go through his Gtube. We will be able to go home on it. They do want to keep
us a bit longer. They stopped his feeds yesterday because he had thrown up 3 times during the night before we got
here. He hasn't thrown up any since. They are going to start them back slowly to see how he does. They said maybe
another 24 hours to see how he tolerates it and that will also give him time for his labs to improve. His kidney function
had went down because of the dehydration. **On a bright note, his potassium looks much much better today. It was
5.9 Monday and now today it was 3.8 I think. So it probably all had to do with him being a little dry.
--Hopefully, HOPEFULLY, I will not miss another Halloween with my boys. Last year Levi was at UK with an infection
and we were fighting with Cincinnati to get him up here for his transplant evaluation. BOY, what a difference a year
makes! I will be glad if we are home by Friday morning or I'l even settle for early afternoon.
--I think that's all. Sorry for the delay in the update, but yesterday was longer than I expected it to be. Maybe today
will be better. So far it is. Love you all. Please say a prayer for my little guy.--Laurie
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October 30th, 2008
****wanted to add to this entry. The following was added after rounds at 11:30am. Since then (it's now
6pm) Levi's ostomy output has skyrocketed. I am having to empty it about every 30-45 minutes and I'm
emptying 60-80 mls. It only takes about 3 of those to equal what he normally empties in a whole day. So
you can imagine the amount he's putting out. He also just threw up a few minutes ago which he hadn't
done since Tuesday. If he keeps that up they'll probably stop his feeds. The doc had ordered him some
fluid again to replace some of this. His heart rate has started climbing probably because he is starting to
get dehydrated. Guess we won't be breaking out of here tomorrow ...unless we do just that--BREAK OUT.
Well, it's a no-go for today, but not because he got worse, they just want to watch him a bit longer. His feeds are
back at goal (well 40ml/hr--his goal at home is 55ml/hr, but that's with a 7 hour window). They said we can work back
to increasing the rate and widening the window at home. They've stopped his stool replacement fluids and his
maintenence fluids. They want to se how his intake and output looks throughout today and overnight. If he does ok,
then they said we can go tomorrow. It will be after rounds which is about 11:30 and it will take a while to get the
orders in. We will be pushing it to get home before trick or treating. Maybe if we pray hard enough, we'll make it.
Everybody cross your fingers.
--They also said he tested positive for adenovirus today. That's a virus that doesn't usually bother you or me, but
can bother a transplant patient because they are immunosuppressed. They didn't seem worried about it though, just
something to follw up on.
--He is a bit puffy today from all the fluids he has. He weight 9.6kg when we got here and he now weighs 10.2 kg.
That's a weight gain of 1.3 pounds, basically from fluid. They said he should pee it off without having to give him any
diuretics.
--Just say a prayer that he does ok and we can get home to go trick-or-treating with the boys. Love you all--Laurie
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October 31st, 2008. ~Happy Halloween~
We're still here, of course. They gave Levi a couple boluses of fluid last night and started him on stool replacemant
fluids. He ended up throwing up again and they stopped his feeds and started him on maintenence fluids as well. His
output is quite a bit better since last night, but still very watery and still not quite the amount it should be. He slept
good last night. He amazes me at how good he looks and how good he acts when he has all this going on. You could
tell he started feeling bad last night. I think his tummy was cramping. BUT today he's back to his old womanizing
self--flirting and waving at all the nurses that pass by his door. It's a sight to see!
--The labs from last night showed his BUN had went from 8 earlier that day (I don't know of his BUN ever being that
low--but low is good) to 22 about 11 last night, so he was starting to get dehydrated again. Now they are really
watching his peeing. He isn't peeing very well. I assumed yesterday (I only changed 1 barely wet diaper all day
yesterday), that it was because his body was just holding on to the fluid because he was pooping out so much, but
he still isn't going very well.
--At rounds they said that the adenovirus that he tested positive for was from a biopsy that they took during the
scope. So they want to scope him again Monday to see if it has worsened or gotten any better. They lowered his
prograf dose and target range so he doesn't have so much of the immunosuppressant in his system and he will be
able to fight this thing off easier. Now, they don't think it is just the c-diff causing all the stool output. They believe
that this adenovirus is to blame as well.
--They also changed his maintenence fluids to TPN so he will be getting the calories and vitamins and minerals he
needs since he is not on his feeds.
--We may be in for another very long stay. If this virus is causing it, we just kind of have to wait for it to pass since
antibiotics have no effect on viruses. If it is anything like the calicivirus he had in June/July we may be here a couple
weeks, UGHH! May be best he's here though. Everybody at home seems to be getting sick as well and if he were
there, he may just pick up some other bug. At least here, he is isolated. I really hate missing Halloween with the boys.
My sis-in-law Beth is supposed to get pics though of them dressed up and send them to me. I'll try to post some
when I get them.
--Say a prayer for Robin's dad. He had a doc appt yesterday and his tummy still isn't healing well and he has to see
a plastic surgeon for possibly another skin graft surgery. He really needs some strength to help him get through this.
I know he has to be getting so tired and worn out. Keep him in your thoughts.--Love you all. please have a safe
Halloween and treasure the time you have with your kids.--Laurie **Trick -or-Treat** Anyone got any candy???
Not much going on, but I figured I'd better update anyway. I took Jacob to see an orthopedic doctor Thursday about
his arm. They took more xrays and didn't see a break. The doc said that sometimes when they see swelling and stuff
right after an injury, the break doesn't show up on an xray for a week or two. Fortunately, Jacob's wasn't broken. He
hasn't acted like it hurt since that night he fell so I wasn't too worried about it, but you never know with kids.
--Brandon turned 9 on Friday. We took him and the other boys to the movies and then to Eubank Park (the pics at
the top are at the park). Then we came home for cake. It was a very good day.
--Today was my nephew, Lukas' 1st birthday party. It was a beautiful day to have a party. The boys had a good time
playing while they were there.
--Levi is still doing great. He had a great time playing outside at the park. Thanks for checking in. Please sign the
guestbook to let us know you were here. We love ya.
--Levi has labs (just to recheck the renal panel) on Monday. I'll let you know the results when I get them. Later--Laurie
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October 11th, 2008
Sorry I forgot to update when I got his lab results this week. His potassium was still on the high side so we increased
his dose of the new medicine they started him on (Fludrocort/Florinex). Instead of giving him 1/2 a tablet, now I give
him a whole tablet. Hopefully this will help and he won't keep having to get the renal panel repeated every week and
getting stuck so much. He has all his labs done on Monday --Prograf, renal, liver, the whole works. Then he has his
clinic appointment on Wednesday. As lazy as I have been, it will probably be after his clinic appointment before I
update again. I hope to get some good news about the ostomy. I would LOVE it if they were ready to reverse it. It is
getting more and more difficult to change the bags. His skin is starting to break down from all the bag changes. I
have bee having to change it once a day. They are suppose to look at it Wednesday (they have special nurses that
only deal with ostomy care) and see if maybe he is ready for a new size. Maybe that is the reason his bags aren't
staying on as long. I just wish for some improvement because it is like torturing him when I change it. I hate being the
"bad guy".
--He's able to stand up in the middle of the floor now with no help. YAY!He can stand alone for several seconds. Still
not able to get him to walk though. I don't think it will be long. He's getting braver. I think he's getting taller too.
--I had a visit from 1st steps. They are the speech and PT people that are here in Somerset. She just came out to do
the initial paperwork. Someone should be coming out in a week or so to do his evaluation. It should be just for
speech to help him eat more, but they may recommend physical therapy or occupational therapy as well. I really
don't think he needs PT. He is behind for his age, but he's progressing normally in my opinion. We will just have to
wait and see what they say.
--I guess that is all for today. We love you all. Take care. Our annual Homecoming at church is tomorrow, you should
come out and join us. Hope to see you there. Let me know if you need directions. 606-219-7826--Laurie
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October 13th, 2008
Just wanted to update about Levi real quick. He started a fever Saturday night (not really high, but warm) then
Sunday morning it was high enough to give Cincinnati a call. They said they wanted me to take him to the ER in
Somerset to check labs and if they were ok we could go home. Well after 7 hours in the Somerset ER we ended up
taking an ambulance ride to Cincinnati anyway. He is acting fine except for the fever. They have done the usual
workup. Labs, blood and urine cultures, chest xray. The bloodwork has came back ok. Cultures take 48 hours so we
will be here until that time frame is up at least, and that is if the cultures stay negative. If it turns positive, then we are
talking at least a week to 10 days. Cross your fingers that won't happen.
--He has been poked so much and aggravated by everyone since yesterday that as soon as someone suspicious
comes in he starts crying. He has an IV to get the antibiotic and they gave him some fluids yesterday at the ER.
When we got up here, I went down to get a bite to eat and by the time I got back, he'd pulled his IV out. So he had to
get stuck again last night to get a new IV. He's been cathed twice and they had to poke his finger this morning to get
a Prograf level and they just came and poked him again to get more blood cultures. Untill they get a negative then
they are going to do cultures everyday. He will have labs again in the morning, so all the veins that were healing are
going to be shot. I feel so bad for him. He is getting older and he knows more of what's going on, but not enough to
understand why.
--My other boys took it really hard that I had to leave. Worse than anytime before. I think it is finally wearing thin on
them. they are ready for this to be over. I told Brandon that I would call when I got up here last night and when I got
to the ER here, there was no signal on my cell. When they took us to our room I had several messages from him
when my signal came back. Robin told me Brandon was worried to death that the ambulance had wrecked because
he knew I should've been here. He was crying and all worked up. Jacob was pretty upset as well. Toby was ok, oddly
enough. Hopefully this will be a short stay so I can get back to them.
--The surgeon stopped by earlier and said there was talk about reversing his ostomy sooner than later (we were
originally told he would have it about a year--he's 7 months post transplant) since he was doing so well. I'm not sure
if the "sooner" meant this admission or not. He kinda caught me off guard. I thought he was just peeking in to say hi.
He said they would have to do some studies like a barium enema and a scope to make sure everything was ok. I am
hoping to get rid of it soon. I would hate to be gone longer, but I would love to be rid of that thing and I'm sure Levi
would be too.
--Sorry so long. We love you. Say a prayer for us that this is just a fever and nothing more....a small virus at the most
that will pass on its own.----Laurie
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October 14th, 2008
I don't want to jinx our good luck too early, but I wanted to let you guys know what was going on. They said at rounds
that we could go home this afternoon after the cultures from Somerset had been negative for 48 hours. So far they
are. We have to go 'til around 3 and then he has an IV med due around 5. After the med, they say we can go. They
said they felt ok with him going home because he is acting so good. In fact the attending docs were very impressed
at how well he's done after transplant compared to the others. They said if one of the cultures they drew here
happened to come back positive after we got home, then it wouldn't be a big deal to come back. He hasn't had a
fever since last night. So all is well. He lost his IV early this morning so he had to get a new one about 6am. He's
been stuck so many times since we've been here. I was gonna ask for another PICC if the cultures had come back
positive. Just tired of him getting stuck. He has no more veins to choose from for IV access. Thankfully they haven't
messed with the AC too much and hopefully they won't have any trouble getting labs at home.
--He has to get labs again on Monday. He was supposed to be up here for clinic tomorrow, but instead we won't have
to come back for 2 weeks because he was already looked over pretty well. The ostomy nurse is also supposed to be
by to check him to see if he may need a larger size. So that's the plan. Hopefully we'll be home before 8pm and I
won't miss the new "House" episode. Thanks for the prayers. I know they work. Love you guys. Leave me a
message, I sure do get bored here.--Laurie
**** Just as I was starting to publish the site the nurse checked his temp. He was 101.3. Hopefully this won''t screw
with things. If it is a virus, he may run a fever for a few days. I wouldn't think they'd want to keep him since the
cultures are negative. We'll see.
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October 16th, 2008
We made it home Tuesday evening after all. They didn't seem too worried about that last fever he had. We didn't
even give him any tylenol for it. It went away on its own. We made it home about 9:30pm. He has an appointment to
go to clinic on the 29th at 2pm and he has labs again on Monday. Pray they are able to find a vein that will draw
blood. He has been doing good since we been home. No fever since Tuesday.
--I got a call today from 1st Steps. She is going to come out Monday at 1:00pm to evaluate him for speech therapy.
Hopefully we will be able to start that soon.
--You'll never guess what I found in Levi's stool yesterday. I went to empty it yesterday morning and I saw a black clot
looking thing floating around. It was smaller than a dime and really stood out because his stool is a dark yellow color.
Well I thought it might have been some type of clot or he'd stuck who knows what in his mouth. So I took it to the sink
to rinse it with water to see if I could tell what it was. Most of it broke apart--I'm assuming it was a combination of stool
and blood. BUT what was left was weird. It was a tiny little stitch. I'm thinking, where in the world did that come from. I
got worried and called Robin and he said I should call Cincy just to be sure. So I did and she called me back a few
hours later after speaking with the surgeon. He said it was nothing to worry about. I'll take his word for it, but
nevertheless it was an odd thing to find. lol
--Everyone take care. Thanks for your prayers, they always help. A friend I worked with at Walmart asked if I would
say a prayer request for someone her son knows. There is a little boy that has a muscle disease and they have only
given him 2 years to live. Please say a prayer for the family and especially that little one. I forgot the name, but God
knows who it is. Thanks--Love you.--Laurie
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October 22nd, 2008
Levi had labs Monday. He got poked 4 times, by 3 people and we gave up. I called his coordinator to see what they
wanted to do about no labs. I told her that I thought he needed another PICC because his veins were just shot from
last week being in the hospital. I asked if she thought we could wait until next week when he has his appointment.
She was concerned about the potassium, but said she'd check with Dr Sam anyway. It's breakin' my heart to watch
him get stuck over and over again. He is getting old enough now that he starts screaming as soon as I sit him on the
exam table. I feel so bad for him. I hate for him to get another PICC, but it may be the best thing. Dr Sam is outta the
country so she said she'd call me back when she heard from him.
--Yesterday she called and said that Dr Sam asked if we could try one more time to get labs Wed (today). If the labs
looked good then she said Dr. Sam was ok waiting a month before he would have to have more. If he had a month
with no labs, that would give his veins time to heal. So I took him this morning. There was a different guy working
today that is really good and he got it the 1st stick. I was so glad.
--The coordinator called about 5pm and said that his potassium was still high. A little lower than when he was in the
hospital last week. She checked with the attending doc and they said that may just be where his is going to stay. The
nutritionist is going to check into his formula to see if it has a lot of potassium in itwhich could be causing the
problem. They may need to adjust his formula. Also his liver numbers had jumped up qiite a bit from last week. She
said she wasn't sure what that means and is still waiting to hear back from Dr. Sam. She said he would probably
respond to her email tonight and she would call me tomorrow to tell me what he said. So you can probably guess that
those labs weren't good enough to wait a month to get any more. So we will probably be getting a PICC. I think it will
be for the best for him as bad as I hate it. I am conflicted with the PICC. I know it would be less sticks for him, but it
also increases his risk for infection because he has a direct line into his blood stream. I have to constantly watch him
because he scratches at the tape because it bothers him 24 hours a day. If only he wasn't such a hard stick. I have
mixed feelings about it.
--Another bummer, Brandon, Jacob, and Toby all three were sick yesterday. I kept Jacob home from school because
he said his belly was hurting. He threw up a couple times yesterday and slept a lot. I took Brandon to school, but got
a call from the school nurse that he was sick so I had to go pick him up. He said he threw up a couple times at
school. And Toby slept all evening and started running a fever last night and threw up just before we went to bed.
They all seem fine this morning so I hope it's passed and passed over Levi without making him sick.
--I guess that's it for now. I'll update as soon as I hear from Julie (the coordinator) tomorrow. Love you all! --Laurie
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October 24th, 2008
Julie called me Wednesday and said that Dr Sam had a couple things for us to try to help with the labs. She said for
me to give him and extra 200mls of water. Also she told me to stop the baby aspirin. So yesterday I did that and he
had to get more labs this morning. Well his BUN dropped a little, but his potassium was still high. Actually a little
higher than Wednesday. It was 6.0 today it was 5.9 Wed. So she told me to still continue giving him the extra 200mls
of water until he gets labs again. She didn't tell me when. I've emailed her so I expect to hear back from her later.
She also said to lower his Prograf dose from 0.5mg to 0.2mg. His level has been running on the high side of his
target range. His range is 7-12 and his was 12 something from Wednesday. This may help the kidneys (or the
potassium issue). That was also the reason for stopping the baby aspirin.
--The same guy stuck him again today. 1st stick again. I guess he's just really good at what he does. I talked to Julie
about my self debate about the PICC and she said she'd schedule it anyway and we would play it by ear and it would
kinda be left up to me ad the doc if it's something that he really needs. If this guy continues to be able to get him on
the 1st stick, I think I'd rather continue that route and forget the PICC for now. Well, I gotta go pick up the boys from
school. Just wanted to update real quick. Thanks. Love you all. --Laurie
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October 27th, 2008
Looks like we will be getting the PICC. Levi's ostomy output went up by about 100mls since I've been giving the extra
water. They don't seem to think the water would cause his output to increase, though. I gave him 300mls of water
instead of 200 over the weekend because they were worried he would get dehydrated. He is tolerating it ok. He had
to get labs again this morning and they wanted to also check his stool and urine. His labs showed he was still a little
dry even with all the extra water. They want me to give him an additional 150mls of water for a total of 450mls today.
Then we have to be in Cincinnati at 9 in the morning to get an IV started to get IV fluids and probably a PICC later
that day. I don't know if they'll want to admit him or not. My guess is that they will. They said it would depend on his
labs tomorrow and how his output is. It hasn't increased anymore, just hovering about 100mls more than normal.
Julie said they may want to scope him because of the increased output. I am supposed to go back to the other dose
of 0.5mg 2 x a day since the output is back up.
--The guy that stuck him last time doesn't work on Mon or Tues. He got stuck 4 times again today. They were able to
get enough blood to do all of the labs they needed except for his prograf level, but since we are going tomorrow they
weren't too worried about that one. Poor baby. I guess the PICC is for the best until his labs get straightened out. I
sure do hate it though. I'll try to update again sometime tomorrow evening either we will be admitted or we will be
back home. More than likely they will admit him. He was supposed to have clinic Wednesday so I don't know if we'll
have to come back if they send us home or not. That's kinda why I was thinking they would keep him. I'll talk to you
all later. Love you. *HUGS*--Laurie
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October 29th, 2008
Poor, poor little Levi. He looks like a pin cushion. We got here about 930am and went to clinic. They thought it would
be best for him to be seen through the ER...get evaluated and get an IV and some IV fluids. I knew more than likely
that he was going to be admitted and they told me that as well. They stuck him 4 times trying to get labs and an IV
started, but where he was so dehydrated and he has few veins to choose from anyway, they didn't have any success
with it. They wanted fluids in him quicker than he was scheduled for the PICC is the reason that they just didn't wait,
but that's what they ended up doing anyway. We just gave him some pedialyte through his Gtube to help until he
could get the IV fluids. Well he got stuck twice for the PICC. Even after the second stick they got it in, but we were
very afraid it wasn't going to go in all the way. There was a curve in the vein and the catheter would just bend when it
got to it. Finally, with a little praying and help from the radiologist, they were able to get it in. He had to use a stiffer
guide wire to guide it past the curve. Before they were done, I started crying. I just was getting so tired of him getting
stuck. They did use a numbing medicine for the PICC, but it can still hurt. He was tied down for about an hour and I
know it was hurting him. I am so glad they got it in. I am gonna guard that thing with my life.
--So after 6-7 hours in the ER we were finally able to get to our room. They wanted him stable before we came up
here and he couldn't get stable until he got hydrated and he couldn't get hydrated until he got IV fluids and he
couldn't get IV fluids without an IV. I was sooo exhausted. We got to the room at about 7pm---I had to pee, I was
starved, I was going on little sleep and I had a very bad headache from my sinuses. What a long day! I'm so glad it's
over. He didn't sleep too well last night. I think he missed his daddy (he sleeps next to Robin every night). --well that
and he was probably having nightmares of being used as a pin cushion. He's resting well now. He woke up when
they did the scope at 8am and has been up since. It's 12 now. He should sleep a while. I should sleep while he
sleeps, but I'm waiting on them to bring lunch. Hopefully he'll wait til after I eat and let me get a little nap in.
--They filled him full of fluids and he is much better today. They scoped him this morning--which looked good, but the
biopsies they took won't be back until later this afternoon. They've done all kinds of stool, urine and blood tests. This
morning the stool came back positive for c diff which is a bacteria that grows naturally in the intestine. It has just
become overgrown. They said it is a very common bacterial infection that they see in kids like him. They've started
him on Flagyl (an antibiotic) which will go through his Gtube. We will be able to go home on it. They do want to keep
us a bit longer. They stopped his feeds yesterday because he had thrown up 3 times during the night before we got
here. He hasn't thrown up any since. They are going to start them back slowly to see how he does. They said maybe
another 24 hours to see how he tolerates it and that will also give him time for his labs to improve. His kidney function
had went down because of the dehydration. **On a bright note, his potassium looks much much better today. It was
5.9 Monday and now today it was 3.8 I think. So it probably all had to do with him being a little dry.
--Hopefully, HOPEFULLY, I will not miss another Halloween with my boys. Last year Levi was at UK with an infection
and we were fighting with Cincinnati to get him up here for his transplant evaluation. BOY, what a difference a year
makes! I will be glad if we are home by Friday morning or I'l even settle for early afternoon.
--I think that's all. Sorry for the delay in the update, but yesterday was longer than I expected it to be. Maybe today
will be better. So far it is. Love you all. Please say a prayer for my little guy.--Laurie
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October 30th, 2008
****wanted to add to this entry. The following was added after rounds at 11:30am. Since then (it's now
6pm) Levi's ostomy output has skyrocketed. I am having to empty it about every 30-45 minutes and I'm
emptying 60-80 mls. It only takes about 3 of those to equal what he normally empties in a whole day. So
you can imagine the amount he's putting out. He also just threw up a few minutes ago which he hadn't
done since Tuesday. If he keeps that up they'll probably stop his feeds. The doc had ordered him some
fluid again to replace some of this. His heart rate has started climbing probably because he is starting to
get dehydrated. Guess we won't be breaking out of here tomorrow ...unless we do just that--BREAK OUT.
Well, it's a no-go for today, but not because he got worse, they just want to watch him a bit longer. His feeds are
back at goal (well 40ml/hr--his goal at home is 55ml/hr, but that's with a 7 hour window). They said we can work back
to increasing the rate and widening the window at home. They've stopped his stool replacement fluids and his
maintenence fluids. They want to se how his intake and output looks throughout today and overnight. If he does ok,
then they said we can go tomorrow. It will be after rounds which is about 11:30 and it will take a while to get the
orders in. We will be pushing it to get home before trick or treating. Maybe if we pray hard enough, we'll make it.
Everybody cross your fingers.
--They also said he tested positive for adenovirus today. That's a virus that doesn't usually bother you or me, but
can bother a transplant patient because they are immunosuppressed. They didn't seem worried about it though, just
something to follw up on.
--He is a bit puffy today from all the fluids he has. He weight 9.6kg when we got here and he now weighs 10.2 kg.
That's a weight gain of 1.3 pounds, basically from fluid. They said he should pee it off without having to give him any
diuretics.
--Just say a prayer that he does ok and we can get home to go trick-or-treating with the boys. Love you all--Laurie
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October 31st, 2008. ~Happy Halloween~
We're still here, of course. They gave Levi a couple boluses of fluid last night and started him on stool replacemant
fluids. He ended up throwing up again and they stopped his feeds and started him on maintenence fluids as well. His
output is quite a bit better since last night, but still very watery and still not quite the amount it should be. He slept
good last night. He amazes me at how good he looks and how good he acts when he has all this going on. You could
tell he started feeling bad last night. I think his tummy was cramping. BUT today he's back to his old womanizing
self--flirting and waving at all the nurses that pass by his door. It's a sight to see!
--The labs from last night showed his BUN had went from 8 earlier that day (I don't know of his BUN ever being that
low--but low is good) to 22 about 11 last night, so he was starting to get dehydrated again. Now they are really
watching his peeing. He isn't peeing very well. I assumed yesterday (I only changed 1 barely wet diaper all day
yesterday), that it was because his body was just holding on to the fluid because he was pooping out so much, but
he still isn't going very well.
--At rounds they said that the adenovirus that he tested positive for was from a biopsy that they took during the
scope. So they want to scope him again Monday to see if it has worsened or gotten any better. They lowered his
prograf dose and target range so he doesn't have so much of the immunosuppressant in his system and he will be
able to fight this thing off easier. Now, they don't think it is just the c-diff causing all the stool output. They believe
that this adenovirus is to blame as well.
--They also changed his maintenence fluids to TPN so he will be getting the calories and vitamins and minerals he
needs since he is not on his feeds.
--We may be in for another very long stay. If this virus is causing it, we just kind of have to wait for it to pass since
antibiotics have no effect on viruses. If it is anything like the calicivirus he had in June/July we may be here a couple
weeks, UGHH! May be best he's here though. Everybody at home seems to be getting sick as well and if he were
there, he may just pick up some other bug. At least here, he is isolated. I really hate missing Halloween with the boys.
My sis-in-law Beth is supposed to get pics though of them dressed up and send them to me. I'll try to post some
when I get them.
--Say a prayer for Robin's dad. He had a doc appt yesterday and his tummy still isn't healing well and he has to see
a plastic surgeon for possibly another skin graft surgery. He really needs some strength to help him get through this.
I know he has to be getting so tired and worn out. Keep him in your thoughts.--Love you all. please have a safe
Halloween and treasure the time you have with your kids.--Laurie **Trick -or-Treat** Anyone got any candy???
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