THURSDAY, NOVEMBER 01, 2007 01:00 PM, EDT
Well, not much has changed since yesterday. Monday seems to be the consensus--- as long as his cultures stay
negative. They are as of 24 hours. So hopefully, we'll keep our fingers crossed. Funny thing is that Robin has
clinicals Monday that he CANNOT miss. It is his first pediatric rotation. Guess where at. HERE! So, daddy won't be
far.I'm not sure what we'll do if they send us before his clinical is over. I think his mom and dad will come up and
take us. I told him he should be able to skip this rotation. lol. He's had 3 1/2 months of it.
He threw up last night and once this morning when the doctor was rounding. He has also been a POOP machine.
So she cut his feeds off to give him a break. They took an xray just to be sure everything is ok, but more than likely
it is just from the infection. He has done this with past infections. He's sleeping now.
I have pics of the other boys in their halloween get-up. I didn't get to see them until Beth e-mailed the pics to me
last night. They were so cute. I missed not being there with them, but they had a good time. Robin's mom and dad
are supposed to bring them up here after while to see us. I miss them so much. They have really been good about
this whole thing. They are very protective about their little Levi. Brandon rubs Levi's nose to put him to sleep,
Jacob is insistant that everybody wash their hands before touching Levi, and Toby makes sure that Levi always
has his pacifier. They are really good BIG brothers. Not once have they acted jealous. They miss us, but haven't
been at all jealous. Me and Robin were talking the other day and he was saying how hard it was for him to tell them
when we thought Levi was going to die. He had to tell them and we let them come and say their good-byes. That
was a very hard day for both of us. BUT that's in the past, Thank goodness. Each and every day since has been a
blessing.
I love you all, take care.
Laurie
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SUNDAY, NOVEMBER 04, 2007 12:16 PM, EST
Tomorrow is the day!!! (Knock on wood) No fever since Tuesday. Cultures are still negative. They started his feeds
back Friday. He hasn't thrown up except once this morning, but I had just given him a bottle. His pooping has
slowed down a lot. He's back to 1-2 a day. He acts like he's feeling better too. He gained weight last night. He had
been losing since we got here. He was 11 pounds when we got here Mon. night and he got down to 10 pounds 11
ounces. BUT last night he went up to 10 pounds 12 ounces. He just don't gain weight good when he doesn't have a
central line bacause they cant give his TPN at full strength. Full strength TPN causes his veins to go a lot faster
because of the high amount of sugar. But then he doesn't get the calories that he needs and that is why he is
losing weight. So the sooner he gets a central line, the better.
Cross your fingers for tomorrow.
Laurie
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MONDAY, NOVEMBER 05, 2007 02:44 PM, EST
Well, there was a slight misunderstanding. Cincinnati wasn't expecting him today. I don't know who flubbed. Long
story short he is leaving first thing in the morning. They have a bed and everything so it is definite. Our docs here
are doing everything they can to get him up there. He still doesn't have a PICC. Cincinnati is supposed to try to get
him scheduled, but if they can't then Dr Flomenhoft is going to plead with Radiology to get him one here tonight.
Just wanted to update real quick.
Laurie
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WEDNESDAY, NOVEMBER 07, 2007 02:12 AM, EST
WE ARE IN CINCINNATI!!!
Yes, it's true. We finally made it. We got here about 7 pm. We don't know anything yet. He lost his IV that was in his
head right as the ambulance was leaving out. THey worked for about 2 hours and finally got him a new one in his
arm after we got here. He is scheduled for a PICC sometime tomorrow, so please pray this one IV holds up until
then because he has NO more places to poke. They called in the special IV team and it took several tries for even
them to find a spot. I'll update as I can. Love you all!!!
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WEDNESDAY, NOVEMBER 07, 2007 01:28 PM, EST
We don't know much yet, but tests are just getting started. He had an ultrasound of his abdomen and an
echocardiogram(ultrasound of his heart) this morning. He was sedated for the echo and is still a little groggy. He is
scheduled for his PICC line at 2pm today. THey put some numbing lotion on at 1 so the site will be numb, they
aren't going to sedate him. They use an ultrasound to find the vein for placement.
I have been very pleased so far. They explain things really well. Like for instance the PICC nurses came and
explained the procedure to us. I learned more from them than I did from his last 2 PICC line placements. THey
showed me pictures and everything. They are very child-focused. They are also very germ conscious. I like that.
This is a huge hospital. It will take us forever to learn it all. And they are moving this unit to another part of the
hospital on the 13th. I'm not sure if we will still be here then or not. It is a possibility. We are on the 5th floor of the
"B" building on the east side now.
I am so glad to finally be here. They are still scheduling everything. All the tests and meetings with doctors. I am
very excited.
Also I would ask that you all pray for my father-in-law. He bit his tongue about a month ago and it never has healed
properly. He went to see a ear/nose/throat specialist and they said it was likely it was cancer and he may have to
have half his tongue removed. He has a cat scan on thursday and goes back to the doc on Monday to get results
and have a biopsy. Please pray that all will be ok. He is a wonderful "PAW" and we hate for this to be happening to
him.
Laurie
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THURSDAY, NOVEMBER 08, 2007 10:45 AM, EST
YEA!! Levi got his PICC yesterday and we are praying that this is a magical one that won't have to be taken out for
a LONG time.
They had a little trouble getting it in, but with a little praying they got it in. It is in the same arm as before. We were
there about 2 hours all together. They didn't sedate him they just numbed the area really well. After we got the
PICC we had to go to ultrasound again for a Doppler of his liver and the veins and arteries in that area. He was
squirmy and we had to have him perfectly still so we had to wait for him to go to sleep. After he went to sleep, he
slept like a log through the whole thing. Then he got a chest x-ray and went back to the room. We were gone from
the room from 2:30 until about 8:30. Me and Robin hadn't ate since about 10 that morning so we were starved. We
got something to eat about 9 last night.
He has had a rough morning. He had an enema with dye and then an x-ray taken of his intestines. Once the dye
filled his intestines it went into his stomach and guess what happened next. He threw up BIG time. Or should I say
has diarrhea of the mouth. I felt bad for him. They suctioned another 75 mL off his stomach through his NG tube.
We swabbed his mouth out once we got back to the room.
THe doctors then made rounds. He has an MRI and a hearing test tomorrow. He will have to be sedated with
general anesthesia. He has a gastric emptying study later today and some more tests Monday and Tuesday. They
are still arranging meetings with people. We meet with the surgeon tomorrow morning and I am sure we'll get a lot
of answers from him.
He has A LOT of labwork that they are gonna space over a couple days bacause of the volume of blood they
need. He was a little anemic when we got here and he will probably need a transfusion tomorrow.
So we will be here at least through Tuesday. I'll keep you all informed. Love you all.
Laurie
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FRIDAY, NOVEMBER 09, 2007 11:13 AM, EST
We talked to the surgeon and coordinator today and got a lot of answers. Be prepared for a lot of reading, but I am
sure you are as excited as I was for the answers.
It was very informative. He talked about the odds for Levi. He said about 50% of kids will die waiting for the donor
organ and about 50% die during the first year from complications from rejection or infection. That means his odds
are about 25% of making it past the first year post transplant. Not great odds, but they are better than the
alternative of not having a transplant.
He said he will be listed for a small bowel AND a liver. This will put him higher on the list. Because he will have such
a small place to put the organs they will remove his spleen. Without his spleen he will be on penicillin for the rest of
his life because the spleen helps fight infection. His liver will be removed. They will keep all the donor organs intact
they said it was better for the blood supply than doing separate ones. Since the pancreas is also attached they will
put the donor pancreas in Levi also. THey will NOT remove his pancreas and he will then have 2 pancreases.
Weird, huh?
Donors have to be close to the same size as Levi, but the more he grows then they can expand the size the donor
can be. They are also trying a new technique that also expands the # of donors which is cutting down a larger
donor to fit Levi. Like cutting the liver down and also the intestines to fit.
Other things that get him higher on the list is bleeding, infections, liver function, and IV access sites. Although
infections can work the opposite way also. If he has an infection when they find a donor they cannot do the
transplant. So our main goal is to keep him healthy as possible and keep him gaining weight. Once this eval is
done it will take about a week to get him on the list.
They also said we can list him at more than one transplant center. There are only a few that transplant intestines in
kids his size. Here, Pittsburg, Miami, Omaha, Nebraska, and UCLA in California. Me and Robin are thinking about
taking him to Pittsburg to list in their region. We will have to talk to out insurance first. This hospital gets donor
organs from a region that includes Ohio, Michigan and a couple other states. Pittsburg will get another group of
states. This may just increase his chances of finding a donor. Although they like you to be within 5 hours of getting
to the hospital when they find a donor so if we listed at Pittsburg we would have to prearrange a flight there to
make it in time. They said Somerset was plenty close enough to make the drive here.
However after the transplant we will need to stay close by like at the Ronald McDonald house for around a year
depending on how well he does. Maybe longer. He will have labs 2-3 times a week and biopsies and scopes to
check for rejection. Once he is past the hurdle of rejection episodes then he may be able to go home, but would
still have to come back once a week or every other week. Appointments would become farther apart as time goes
by.
He will be on the list for donors that are 3-15 kg (6 1/2-33 pounds) and 1-10 years old. (He is about 5 kg 11
pounds) They said he is about at the minimum of weight that they will transplant. But the bigger the better.
They will not be able to try any other techniques besides transplant because of what little he has. We cannot
donate for him because of him needing more than one organ.
They said there is no way to know how long it will be. It could be as soon as he is listed to never making it long
enough to find a donor.
So his odds are abviously not good, but he is a fighter and has beat the odds already so we have faith this WILL
happen for him. I feel good to finally have gotten some answers. The surgeon was really nice and said we would be
in close contact with them through this whole process. We will probably be coming up here quite often.
As far as getting out of here this time, it will probably be Wednesday. We meet with the GI doctor that is the director
of the program on Tuesday so he will probably give us a lot more info too.
Hope you all can let that soak in. If you have questions or wanna talk just call me. 606-305-3929
Love you guys.
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MONDAY, NOVEMBER 12, 2007 07:06 PM, EST
Well, tomorrow is the last day of the evaluation. We didn't have any tests or meetings over the weekend. Robin had
to go back to Somerset to work, so me and Levi just hang out. Today he had a GFR test--it tests to see how well
his kidneys function. We also met with the Chaplain, a financial person and the social worker. No new info about
the transplant, but a lot of helpful advice for the whole transplant process.
Tomorrow he has a upper GI test and we meet with Dr Kocoshis the director of the transplant program and a
Psychologist on the transplant team. THey said after his last meeting, WE CAN GO HOME!
I hope we get to spend Thanksgiving and Christmas at home. Like I said before. This line WILL be the magic line
that won't get infected. (knock on wood) And hopefully it will be the last line until transplant. Cross your fingers with
me!!
Love ya all!!
Laurie
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WEDNESDAY, NOVEMBER 14, 2007 10:45 PM, EST
We finally made it home!!!. We had a slight set-back. We were supposed to leave yesterday afternoon after
meeting with the GI doctor. Levi got his immunizations Monday an then he ran a fever Monday night. I had a bad
feeling he had another infection. They thought it was probably from the shots, but did cultures anyway and said he
bought us another night there just to make sure the cultures stayed negative. They did and we got to leave about
10:30 this morning. We got home around 2:30pm in just enough time to pick Brandon up from school. He was so
surprised to see me. He wasn't expecting it at all. lol
Anyway, yesterday Levi had an upper GI. They give him barium through a bottle and through his NG tube and take
pictures as it passes through. Then we met with the Psychologist. He just wanted to get to know us and let us know
that he was there for us. We also met with the director of the program. He told a lot of the same stuff the surgeon
told us, but gave us a few more specifics. He said that there odds were a little better than 50% after transplant.
They were more like 60-65%. In fact of the 6 they transplanted this year 5 are still living. They said the main reason
they don't survive to transplant is because their livers start to fail. He said they typically get bad slowly then all of a
sudden , they will get really bad. We need to just keep him as healthy as possible. He also said he would try to get
ahold of a new kind of lipid(fat) that was made from fish oil and they had had pretty good results with it in other
places.( THe lipids is what damages the liver so much) The only thing is that it is still experimental and out
insurance won't pay for it so they won't be able to bill our insurance. He said he would try his best to get his hands
on some for Levi. Also he started Levi on a treatment to keep his gut clean as possible from the bacteria that
grows naturally. The kind he keeps getting infections from. He will be on a couple different antibiotics orally for 2
weeks then off 2 weeks then back on and so on.
He said the average time to wait is about 3-4 months, but could be as much as 7 or 8. It just depends and Levi
would have to stay healthy. That is our goal.
The whole team has to meet tomorrow and decide that Levi needs to be put on the list. Then it has to get other
approvals from the state and so on. He said it may take about a week to get put on the list. We also have to have
checkups every couple of weeks at Cincinnati.
I guess that is al. Love yall
Laurie
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FRIDAY, NOVEMBER 16, 2007 11:34 AM, EST
Well, we have been home 2 days. So far so good. He gets a little fussy at times, but I think he isn't used to all the
racket his 3 brothers make on a regular basis. He's used to a nice quiet hospital room.
I got a call today from the disability office. He was APPROVED. Well, sort of. I still have to do the non-medical part
of it. I have to turn in our wages, home and car values and how much we owe on each. Hopefully he will be able to
get SSI benefits. I will turn those things in later today. I also have to fill out a payee application because the
payments will come to me for him. I really hope he gets benefits. We could really use it.
I got a call yesterday from the transplant coordinator. The team met and agreed that he needs to be put on the list.
(Well, duh. But they still have to go through the process) They sent off his paperwork for approvals by the state
and national people. Hopefully it won't take long to get him on the list.
She also gave me his next appointment date at Cincinnati. He goes on the 29th at 1:00. I'm not sure if I said or not,
but we will be going up there every 2 weeks or so. I don't mind. Whatever it takes. I just want to keep him healthy
and growing until he gets a transplant.
later,
Laurie : )
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MONDAY, NOVEMBER 19, 2007 01:32 PM, EST
The weekend went well. Sunday was very pretty outside so we got some family pictures taken. I'll use them in our
Christmas cards. I can't believe Christmas is just around the corner. I lost almost all of October in the hospital. So it
seems like the holidays are sneaking up exceptionally fast this year. Nothing really new to update. He's getting his
weekly labs drawn today by his home health nurse. Other than that, that's it.
Later,
Laurie
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FRIDAY, NOVEMBER 23, 2007 09:52 PM, EST
We had a good Thanksgiving. Levi has been doing good. We are really enjoying being at home.I still haven't heard
from the transplant team if he has made the list yet or not. I assume it may take a lttle longer since it is a holiday. It
was a week yesterday. They said it woud be a week or maybe a little longer before we would hear anything.
We got some bad news today. You may remember that a few weeks ago I told you about my father-in-law's tongue.
Well the biopsy they did came back Sunday and it was cancer. They told him he would have to have 1/3 to 1/2 of
his tongue removed. They scheduled him for today at Central Baptist Hospital in Lexington for the surgery. He also
had a PET scan on Monday to see if there was cancer any where else, but won't get the results back until this
coming Monday. Anyway, today when they did the surgery, they saw that the cancer was covering more than half
the tongue and they would have to take the whole tongue to get it all. They opted to do radiation and chemo
because that is what the doc recommended instead of removing the whole tongue. He did a scope down his throat
to check there to see if it had spread there and it came back good. He told them that in most cases where there
was cancer like this and if they are not smokers then it is just localized. I really hope so, but he will be really sick
from the radiation and chemo. He has to have it for like 7 weeks. Please pray for him. He is like a dad to me and is
wonderful to all 9 of his grandkids. Him and Robin are very close--well this whole family is close. He is a very
important part of it. We love him.
Take care and I hope you all had a great Thanksgiving.
Laurie
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TUESDAY, NOVEMBER 27, 2007 01:12 PM, EST
Things have been going normally for once.(Knock on wood) Well as normal as having a baby with very special
needs can be. He keeps me busy. He is very spoiled. Someone has to be holding him ALL the time. He throws the
biggest fits ever if he's left alone for very long. I don't mind though. I'd much rather have a spoiled rotten baby than
none at all. Robin's family has been good about helping me. They will watch him if I need to run to Walmart or go
pick Brandon up from school. It gives me a little break. I went and got my hair cut yesterday. It needed it so bad. I
had been in the hospital for so long and ponytails were getting old. I think it looks good and it feels a lot better. I
haven't had much "me" time lately so it felt good to do something for me.
He has been on antibiotics since we left Cincinnati. They started him on them for 2 weeks then off 2 weeks then
back on and so on. This was to help with the bacteria in his gut--to keep it from overgrowing and crossing into his
blood. Today is the last day on them. I am worried that when he stops them he will get sick again. I am just crossing
my fingers that that won't happen. He has been doing so good.
I still haven't heard from the transplant team if he's on the list yet. Shouldn't be long though. He has an
appointment Thursday at 1:00pm. Maybe they will tell us then. I am excited to see how much he weighs. He
weighed a little over 11 pounds when we left Cincinnati. I hope he has gained good.
About my father-in-law: he had another appointment yesterday. He got the results of the PET scan. It was good.
The did see one "hot spot" on his hip, but said it was a weird place for a cancer and that it was more than likely
arthritis. And they also told him that the radiation and chemo would give him a 90% chance of survival. That was
wonderful news. He sill hasn't gotten that set up yet but meets with the cancer docs later this week. He still has to
go through the radiation and chemo and that will make him very sick, but he will more than likely beat this thing.
2007 has been a terrible year for this family, I am praying 2008 will be much better. We have been through a lot
this year, but I stil think we have a lot to be thankful for. Hopefully the new year will bring great things.
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FRIDAY, NOVEMBER 30, 2007 08:29 PM, EST
Hey everyone!
We had our 1st doctor's appointment yesterday. It went well. But before we ever left home, I got a call from the
social security office. Levi was DENIED his SSI based on us having too much resources! I am so furious. How can
we have "TOO MUCH RESOURCES"?! We are living off Robin's income only. They said our house and the
timeshare (which we can't even use because we can't go too far from the hospital) have about 6000 in equity
(which I doubt we could even get) and if you have over 5000 then you have too much resources! I hate being in
the middle. We have too much to get much help (thankfully we got his medicaid, but solely based on him getting a
respite service), but we don't make enough to do it by ourselves. The system is so screwed up! I have no idea how
we are going to make it. I may have to go back to work, but I don't know how I would do that either. Levi takes a full
time person. If maybe we can make it til we get our income tax refund, then we may be ok for a while. I don't know
we will just have to do what we can. Sorry for the vent, I just am really frustrated right now. They did say that if we
sold our house to try to do an appeal to get reinstated then maybe he could get something. We are planning to
anyway, we just haven't had much chance to get everything out and cleaned up. Robin gets out of school in a
couple of weeks. Hopefully we can do it then.
ANYWAY!! We had a good visit at the doctor. He weighed 11 pounds 6 ounces. A little weight gain. They said they
would increase the volume of fluid he gets IV to increase the calories and that should help him put on a little more
weight.
The doc said his belly was still soft (which was good). He wants to see him back in a couple of weeks. We go back
the 12th or 13th I think. He said hopefully the antibiotic treatment he is on will help keep him from getting infections.
He said the infections can damage the liver just as much as the lipids.
We also got our beeper.YEA They had to do a couple more labs to get him on the list. Should be a day or 2. I am
so glad. Seems like we're one step closer.
Overall it was a good visit.
This morning Levi tried a new trick. It didn't worry me too much, but I called the doc anyway. I had increased his
feeds to 6ml/hr on Monday. He was at 5. This morning when he pooped, it looked just like it did when it went in,
white and thin like the formula. They call that dumping. After I called and left a message he threw up and pooped 3
more times. After he threw up, I cut his feeds off until the nurse called me back. She said to cut him back to 5. I will
cut it down more if he continues to do that. Hopefully he won't. He's still been really fussy. I don't know if he's in
pain or just being a normal fussy baby. I let the doc know yesterday.
Well, that's all for now. I'll catch ya all later. *HUGS*
Laurie
Well, not much has changed since yesterday. Monday seems to be the consensus--- as long as his cultures stay
negative. They are as of 24 hours. So hopefully, we'll keep our fingers crossed. Funny thing is that Robin has
clinicals Monday that he CANNOT miss. It is his first pediatric rotation. Guess where at. HERE! So, daddy won't be
far.I'm not sure what we'll do if they send us before his clinical is over. I think his mom and dad will come up and
take us. I told him he should be able to skip this rotation. lol. He's had 3 1/2 months of it.
He threw up last night and once this morning when the doctor was rounding. He has also been a POOP machine.
So she cut his feeds off to give him a break. They took an xray just to be sure everything is ok, but more than likely
it is just from the infection. He has done this with past infections. He's sleeping now.
I have pics of the other boys in their halloween get-up. I didn't get to see them until Beth e-mailed the pics to me
last night. They were so cute. I missed not being there with them, but they had a good time. Robin's mom and dad
are supposed to bring them up here after while to see us. I miss them so much. They have really been good about
this whole thing. They are very protective about their little Levi. Brandon rubs Levi's nose to put him to sleep,
Jacob is insistant that everybody wash their hands before touching Levi, and Toby makes sure that Levi always
has his pacifier. They are really good BIG brothers. Not once have they acted jealous. They miss us, but haven't
been at all jealous. Me and Robin were talking the other day and he was saying how hard it was for him to tell them
when we thought Levi was going to die. He had to tell them and we let them come and say their good-byes. That
was a very hard day for both of us. BUT that's in the past, Thank goodness. Each and every day since has been a
blessing.
I love you all, take care.
Laurie
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SUNDAY, NOVEMBER 04, 2007 12:16 PM, EST
Tomorrow is the day!!! (Knock on wood) No fever since Tuesday. Cultures are still negative. They started his feeds
back Friday. He hasn't thrown up except once this morning, but I had just given him a bottle. His pooping has
slowed down a lot. He's back to 1-2 a day. He acts like he's feeling better too. He gained weight last night. He had
been losing since we got here. He was 11 pounds when we got here Mon. night and he got down to 10 pounds 11
ounces. BUT last night he went up to 10 pounds 12 ounces. He just don't gain weight good when he doesn't have a
central line bacause they cant give his TPN at full strength. Full strength TPN causes his veins to go a lot faster
because of the high amount of sugar. But then he doesn't get the calories that he needs and that is why he is
losing weight. So the sooner he gets a central line, the better.
Cross your fingers for tomorrow.
Laurie
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MONDAY, NOVEMBER 05, 2007 02:44 PM, EST
Well, there was a slight misunderstanding. Cincinnati wasn't expecting him today. I don't know who flubbed. Long
story short he is leaving first thing in the morning. They have a bed and everything so it is definite. Our docs here
are doing everything they can to get him up there. He still doesn't have a PICC. Cincinnati is supposed to try to get
him scheduled, but if they can't then Dr Flomenhoft is going to plead with Radiology to get him one here tonight.
Just wanted to update real quick.
Laurie
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WEDNESDAY, NOVEMBER 07, 2007 02:12 AM, EST
WE ARE IN CINCINNATI!!!
Yes, it's true. We finally made it. We got here about 7 pm. We don't know anything yet. He lost his IV that was in his
head right as the ambulance was leaving out. THey worked for about 2 hours and finally got him a new one in his
arm after we got here. He is scheduled for a PICC sometime tomorrow, so please pray this one IV holds up until
then because he has NO more places to poke. They called in the special IV team and it took several tries for even
them to find a spot. I'll update as I can. Love you all!!!
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WEDNESDAY, NOVEMBER 07, 2007 01:28 PM, EST
We don't know much yet, but tests are just getting started. He had an ultrasound of his abdomen and an
echocardiogram(ultrasound of his heart) this morning. He was sedated for the echo and is still a little groggy. He is
scheduled for his PICC line at 2pm today. THey put some numbing lotion on at 1 so the site will be numb, they
aren't going to sedate him. They use an ultrasound to find the vein for placement.
I have been very pleased so far. They explain things really well. Like for instance the PICC nurses came and
explained the procedure to us. I learned more from them than I did from his last 2 PICC line placements. THey
showed me pictures and everything. They are very child-focused. They are also very germ conscious. I like that.
This is a huge hospital. It will take us forever to learn it all. And they are moving this unit to another part of the
hospital on the 13th. I'm not sure if we will still be here then or not. It is a possibility. We are on the 5th floor of the
"B" building on the east side now.
I am so glad to finally be here. They are still scheduling everything. All the tests and meetings with doctors. I am
very excited.
Also I would ask that you all pray for my father-in-law. He bit his tongue about a month ago and it never has healed
properly. He went to see a ear/nose/throat specialist and they said it was likely it was cancer and he may have to
have half his tongue removed. He has a cat scan on thursday and goes back to the doc on Monday to get results
and have a biopsy. Please pray that all will be ok. He is a wonderful "PAW" and we hate for this to be happening to
him.
Laurie
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THURSDAY, NOVEMBER 08, 2007 10:45 AM, EST
YEA!! Levi got his PICC yesterday and we are praying that this is a magical one that won't have to be taken out for
a LONG time.
They had a little trouble getting it in, but with a little praying they got it in. It is in the same arm as before. We were
there about 2 hours all together. They didn't sedate him they just numbed the area really well. After we got the
PICC we had to go to ultrasound again for a Doppler of his liver and the veins and arteries in that area. He was
squirmy and we had to have him perfectly still so we had to wait for him to go to sleep. After he went to sleep, he
slept like a log through the whole thing. Then he got a chest x-ray and went back to the room. We were gone from
the room from 2:30 until about 8:30. Me and Robin hadn't ate since about 10 that morning so we were starved. We
got something to eat about 9 last night.
He has had a rough morning. He had an enema with dye and then an x-ray taken of his intestines. Once the dye
filled his intestines it went into his stomach and guess what happened next. He threw up BIG time. Or should I say
has diarrhea of the mouth. I felt bad for him. They suctioned another 75 mL off his stomach through his NG tube.
We swabbed his mouth out once we got back to the room.
THe doctors then made rounds. He has an MRI and a hearing test tomorrow. He will have to be sedated with
general anesthesia. He has a gastric emptying study later today and some more tests Monday and Tuesday. They
are still arranging meetings with people. We meet with the surgeon tomorrow morning and I am sure we'll get a lot
of answers from him.
He has A LOT of labwork that they are gonna space over a couple days bacause of the volume of blood they
need. He was a little anemic when we got here and he will probably need a transfusion tomorrow.
So we will be here at least through Tuesday. I'll keep you all informed. Love you all.
Laurie
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FRIDAY, NOVEMBER 09, 2007 11:13 AM, EST
We talked to the surgeon and coordinator today and got a lot of answers. Be prepared for a lot of reading, but I am
sure you are as excited as I was for the answers.
It was very informative. He talked about the odds for Levi. He said about 50% of kids will die waiting for the donor
organ and about 50% die during the first year from complications from rejection or infection. That means his odds
are about 25% of making it past the first year post transplant. Not great odds, but they are better than the
alternative of not having a transplant.
He said he will be listed for a small bowel AND a liver. This will put him higher on the list. Because he will have such
a small place to put the organs they will remove his spleen. Without his spleen he will be on penicillin for the rest of
his life because the spleen helps fight infection. His liver will be removed. They will keep all the donor organs intact
they said it was better for the blood supply than doing separate ones. Since the pancreas is also attached they will
put the donor pancreas in Levi also. THey will NOT remove his pancreas and he will then have 2 pancreases.
Weird, huh?
Donors have to be close to the same size as Levi, but the more he grows then they can expand the size the donor
can be. They are also trying a new technique that also expands the # of donors which is cutting down a larger
donor to fit Levi. Like cutting the liver down and also the intestines to fit.
Other things that get him higher on the list is bleeding, infections, liver function, and IV access sites. Although
infections can work the opposite way also. If he has an infection when they find a donor they cannot do the
transplant. So our main goal is to keep him healthy as possible and keep him gaining weight. Once this eval is
done it will take about a week to get him on the list.
They also said we can list him at more than one transplant center. There are only a few that transplant intestines in
kids his size. Here, Pittsburg, Miami, Omaha, Nebraska, and UCLA in California. Me and Robin are thinking about
taking him to Pittsburg to list in their region. We will have to talk to out insurance first. This hospital gets donor
organs from a region that includes Ohio, Michigan and a couple other states. Pittsburg will get another group of
states. This may just increase his chances of finding a donor. Although they like you to be within 5 hours of getting
to the hospital when they find a donor so if we listed at Pittsburg we would have to prearrange a flight there to
make it in time. They said Somerset was plenty close enough to make the drive here.
However after the transplant we will need to stay close by like at the Ronald McDonald house for around a year
depending on how well he does. Maybe longer. He will have labs 2-3 times a week and biopsies and scopes to
check for rejection. Once he is past the hurdle of rejection episodes then he may be able to go home, but would
still have to come back once a week or every other week. Appointments would become farther apart as time goes
by.
He will be on the list for donors that are 3-15 kg (6 1/2-33 pounds) and 1-10 years old. (He is about 5 kg 11
pounds) They said he is about at the minimum of weight that they will transplant. But the bigger the better.
They will not be able to try any other techniques besides transplant because of what little he has. We cannot
donate for him because of him needing more than one organ.
They said there is no way to know how long it will be. It could be as soon as he is listed to never making it long
enough to find a donor.
So his odds are abviously not good, but he is a fighter and has beat the odds already so we have faith this WILL
happen for him. I feel good to finally have gotten some answers. The surgeon was really nice and said we would be
in close contact with them through this whole process. We will probably be coming up here quite often.
As far as getting out of here this time, it will probably be Wednesday. We meet with the GI doctor that is the director
of the program on Tuesday so he will probably give us a lot more info too.
Hope you all can let that soak in. If you have questions or wanna talk just call me. 606-305-3929
Love you guys.
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MONDAY, NOVEMBER 12, 2007 07:06 PM, EST
Well, tomorrow is the last day of the evaluation. We didn't have any tests or meetings over the weekend. Robin had
to go back to Somerset to work, so me and Levi just hang out. Today he had a GFR test--it tests to see how well
his kidneys function. We also met with the Chaplain, a financial person and the social worker. No new info about
the transplant, but a lot of helpful advice for the whole transplant process.
Tomorrow he has a upper GI test and we meet with Dr Kocoshis the director of the transplant program and a
Psychologist on the transplant team. THey said after his last meeting, WE CAN GO HOME!
I hope we get to spend Thanksgiving and Christmas at home. Like I said before. This line WILL be the magic line
that won't get infected. (knock on wood) And hopefully it will be the last line until transplant. Cross your fingers with
me!!
Love ya all!!
Laurie
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WEDNESDAY, NOVEMBER 14, 2007 10:45 PM, EST
We finally made it home!!!. We had a slight set-back. We were supposed to leave yesterday afternoon after
meeting with the GI doctor. Levi got his immunizations Monday an then he ran a fever Monday night. I had a bad
feeling he had another infection. They thought it was probably from the shots, but did cultures anyway and said he
bought us another night there just to make sure the cultures stayed negative. They did and we got to leave about
10:30 this morning. We got home around 2:30pm in just enough time to pick Brandon up from school. He was so
surprised to see me. He wasn't expecting it at all. lol
Anyway, yesterday Levi had an upper GI. They give him barium through a bottle and through his NG tube and take
pictures as it passes through. Then we met with the Psychologist. He just wanted to get to know us and let us know
that he was there for us. We also met with the director of the program. He told a lot of the same stuff the surgeon
told us, but gave us a few more specifics. He said that there odds were a little better than 50% after transplant.
They were more like 60-65%. In fact of the 6 they transplanted this year 5 are still living. They said the main reason
they don't survive to transplant is because their livers start to fail. He said they typically get bad slowly then all of a
sudden , they will get really bad. We need to just keep him as healthy as possible. He also said he would try to get
ahold of a new kind of lipid(fat) that was made from fish oil and they had had pretty good results with it in other
places.( THe lipids is what damages the liver so much) The only thing is that it is still experimental and out
insurance won't pay for it so they won't be able to bill our insurance. He said he would try his best to get his hands
on some for Levi. Also he started Levi on a treatment to keep his gut clean as possible from the bacteria that
grows naturally. The kind he keeps getting infections from. He will be on a couple different antibiotics orally for 2
weeks then off 2 weeks then back on and so on.
He said the average time to wait is about 3-4 months, but could be as much as 7 or 8. It just depends and Levi
would have to stay healthy. That is our goal.
The whole team has to meet tomorrow and decide that Levi needs to be put on the list. Then it has to get other
approvals from the state and so on. He said it may take about a week to get put on the list. We also have to have
checkups every couple of weeks at Cincinnati.
I guess that is al. Love yall
Laurie
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FRIDAY, NOVEMBER 16, 2007 11:34 AM, EST
Well, we have been home 2 days. So far so good. He gets a little fussy at times, but I think he isn't used to all the
racket his 3 brothers make on a regular basis. He's used to a nice quiet hospital room.
I got a call today from the disability office. He was APPROVED. Well, sort of. I still have to do the non-medical part
of it. I have to turn in our wages, home and car values and how much we owe on each. Hopefully he will be able to
get SSI benefits. I will turn those things in later today. I also have to fill out a payee application because the
payments will come to me for him. I really hope he gets benefits. We could really use it.
I got a call yesterday from the transplant coordinator. The team met and agreed that he needs to be put on the list.
(Well, duh. But they still have to go through the process) They sent off his paperwork for approvals by the state
and national people. Hopefully it won't take long to get him on the list.
She also gave me his next appointment date at Cincinnati. He goes on the 29th at 1:00. I'm not sure if I said or not,
but we will be going up there every 2 weeks or so. I don't mind. Whatever it takes. I just want to keep him healthy
and growing until he gets a transplant.
later,
Laurie : )
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MONDAY, NOVEMBER 19, 2007 01:32 PM, EST
The weekend went well. Sunday was very pretty outside so we got some family pictures taken. I'll use them in our
Christmas cards. I can't believe Christmas is just around the corner. I lost almost all of October in the hospital. So it
seems like the holidays are sneaking up exceptionally fast this year. Nothing really new to update. He's getting his
weekly labs drawn today by his home health nurse. Other than that, that's it.
Later,
Laurie
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FRIDAY, NOVEMBER 23, 2007 09:52 PM, EST
We had a good Thanksgiving. Levi has been doing good. We are really enjoying being at home.I still haven't heard
from the transplant team if he has made the list yet or not. I assume it may take a lttle longer since it is a holiday. It
was a week yesterday. They said it woud be a week or maybe a little longer before we would hear anything.
We got some bad news today. You may remember that a few weeks ago I told you about my father-in-law's tongue.
Well the biopsy they did came back Sunday and it was cancer. They told him he would have to have 1/3 to 1/2 of
his tongue removed. They scheduled him for today at Central Baptist Hospital in Lexington for the surgery. He also
had a PET scan on Monday to see if there was cancer any where else, but won't get the results back until this
coming Monday. Anyway, today when they did the surgery, they saw that the cancer was covering more than half
the tongue and they would have to take the whole tongue to get it all. They opted to do radiation and chemo
because that is what the doc recommended instead of removing the whole tongue. He did a scope down his throat
to check there to see if it had spread there and it came back good. He told them that in most cases where there
was cancer like this and if they are not smokers then it is just localized. I really hope so, but he will be really sick
from the radiation and chemo. He has to have it for like 7 weeks. Please pray for him. He is like a dad to me and is
wonderful to all 9 of his grandkids. Him and Robin are very close--well this whole family is close. He is a very
important part of it. We love him.
Take care and I hope you all had a great Thanksgiving.
Laurie
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TUESDAY, NOVEMBER 27, 2007 01:12 PM, EST
Things have been going normally for once.(Knock on wood) Well as normal as having a baby with very special
needs can be. He keeps me busy. He is very spoiled. Someone has to be holding him ALL the time. He throws the
biggest fits ever if he's left alone for very long. I don't mind though. I'd much rather have a spoiled rotten baby than
none at all. Robin's family has been good about helping me. They will watch him if I need to run to Walmart or go
pick Brandon up from school. It gives me a little break. I went and got my hair cut yesterday. It needed it so bad. I
had been in the hospital for so long and ponytails were getting old. I think it looks good and it feels a lot better. I
haven't had much "me" time lately so it felt good to do something for me.
He has been on antibiotics since we left Cincinnati. They started him on them for 2 weeks then off 2 weeks then
back on and so on. This was to help with the bacteria in his gut--to keep it from overgrowing and crossing into his
blood. Today is the last day on them. I am worried that when he stops them he will get sick again. I am just crossing
my fingers that that won't happen. He has been doing so good.
I still haven't heard from the transplant team if he's on the list yet. Shouldn't be long though. He has an
appointment Thursday at 1:00pm. Maybe they will tell us then. I am excited to see how much he weighs. He
weighed a little over 11 pounds when we left Cincinnati. I hope he has gained good.
About my father-in-law: he had another appointment yesterday. He got the results of the PET scan. It was good.
The did see one "hot spot" on his hip, but said it was a weird place for a cancer and that it was more than likely
arthritis. And they also told him that the radiation and chemo would give him a 90% chance of survival. That was
wonderful news. He sill hasn't gotten that set up yet but meets with the cancer docs later this week. He still has to
go through the radiation and chemo and that will make him very sick, but he will more than likely beat this thing.
2007 has been a terrible year for this family, I am praying 2008 will be much better. We have been through a lot
this year, but I stil think we have a lot to be thankful for. Hopefully the new year will bring great things.
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FRIDAY, NOVEMBER 30, 2007 08:29 PM, EST
Hey everyone!
We had our 1st doctor's appointment yesterday. It went well. But before we ever left home, I got a call from the
social security office. Levi was DENIED his SSI based on us having too much resources! I am so furious. How can
we have "TOO MUCH RESOURCES"?! We are living off Robin's income only. They said our house and the
timeshare (which we can't even use because we can't go too far from the hospital) have about 6000 in equity
(which I doubt we could even get) and if you have over 5000 then you have too much resources! I hate being in
the middle. We have too much to get much help (thankfully we got his medicaid, but solely based on him getting a
respite service), but we don't make enough to do it by ourselves. The system is so screwed up! I have no idea how
we are going to make it. I may have to go back to work, but I don't know how I would do that either. Levi takes a full
time person. If maybe we can make it til we get our income tax refund, then we may be ok for a while. I don't know
we will just have to do what we can. Sorry for the vent, I just am really frustrated right now. They did say that if we
sold our house to try to do an appeal to get reinstated then maybe he could get something. We are planning to
anyway, we just haven't had much chance to get everything out and cleaned up. Robin gets out of school in a
couple of weeks. Hopefully we can do it then.
ANYWAY!! We had a good visit at the doctor. He weighed 11 pounds 6 ounces. A little weight gain. They said they
would increase the volume of fluid he gets IV to increase the calories and that should help him put on a little more
weight.
The doc said his belly was still soft (which was good). He wants to see him back in a couple of weeks. We go back
the 12th or 13th I think. He said hopefully the antibiotic treatment he is on will help keep him from getting infections.
He said the infections can damage the liver just as much as the lipids.
We also got our beeper.YEA They had to do a couple more labs to get him on the list. Should be a day or 2. I am
so glad. Seems like we're one step closer.
Overall it was a good visit.
This morning Levi tried a new trick. It didn't worry me too much, but I called the doc anyway. I had increased his
feeds to 6ml/hr on Monday. He was at 5. This morning when he pooped, it looked just like it did when it went in,
white and thin like the formula. They call that dumping. After I called and left a message he threw up and pooped 3
more times. After he threw up, I cut his feeds off until the nurse called me back. She said to cut him back to 5. I will
cut it down more if he continues to do that. Hopefully he won't. He's still been really fussy. I don't know if he's in
pain or just being a normal fussy baby. I let the doc know yesterday.
Well, that's all for now. I'll catch ya all later. *HUGS*
Laurie
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