MONDAY, OCTOBER 01, 2007 05:19 PM, EDT
LEVI IS 3 MONTHS OLD TODAY!!!
Well, I just wanted to let you know what was going on today. Levi is doing ok.
The infectious disease doc said that his peripheral blood cultures were positive after 41 hours. He said he was
surprised. They drew more this a.m. and he said if they are still positive that they will need to do a heart ultrasound
to make sure that it isn't on his heart. He has had a heart US everytime he has had an infection. They heard a
murmur last time, but it was normal. This would make 3 he's had if they do it this time.
He lost the IV in his hand a little earlier. They put another one in his foot. The one in his hand infiltrated. He was
acting like it was hurting him and they took it out.
He seems like that made him feel better because he had been a little fussy all day today. Now he is napping. They
are going to put the PICC line in tomorrow. And that should last him until he gets his broviac in 4-5 days.
Other than that, not much has changed.
I have visitation at the funeral home tomorrow evening and Wednesday is the burial. So I will be away from Levi for
most of both days. I hope I can keep it together. I really loved my aunt. She was a big kid at heart. Al her nieces and
nephews loved her creativity (she was an artist). I will really miss her. But she has gone to a better place.
Thank you all for everything. It may be a couple of days before I update again. Take care.
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THURSDAY, OCTOBER 04, 2007 01:01 PM, EDT
Levi is doing ok. They didn't put the PICC line in yet. They are now saying that they want 1 week of neg cultures,
before they put in another broviac. Something was said about a PICC line on Saturday, but I am not sure. The week
will be up on Tuesday. So I guess his broviac line will come sometime shortly after that. I am not sure how long they
will keep us after the broviac is put in. I would like to go home before we head to Cincinnati. That evaluation is on
the 22nd. I have recieved a packet from them and have been reading over all the material. It is very interesting.
My aunt's funeral went well. I wrote a poem that another one of my cousin's read for me. It was really nice. It fit
perfectly. She was an artist and my sister had the idea that we could draw on her casket. A lot of her neices,
nephews, sisters, brothers and friends drew pictures and left messages on her casket with different color
permanent markers. It was really different, but she would have loved it!
I appreciate all of your prayers for me and my family. I love you all.
--------------------------------------------------------------------------------
FRIDAY, OCTOBER 05, 2007 12:08 PM, EDT
Dr. Shashidhar (GI) said this morning that they are planning on putting a PICC line in on Monday or Tuesday. They
would send us home with that for a while and bring him back for a broviac He said he knew we were going to
Cincinnati on the 22nd and they would bring him back for the broviac either right before we go or when we get back.
He also said I could try offering him a little rice cereal. A couple of tablespoons once a day. He just wanted to see
how he would tolerate it. I told him it would probably be interesting. He will be like, "What is that?!!" I'll let you know
how that goes. If I can I'll get a picture of the face he makes. I am sure it will be a good one.
Talk to you all later.
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MONDAY, OCTOBER 08, 2007 10:42 AM, EDT
We hope to get a PICC line in tomorrow. THey didn't have anyone that could do it today.
He had a rough weekend. Saturday morning he threw up quite a bit and when he did he threw up his NG tube out
his mouth. When I called the nurse she took it out and she placed another one. He threw up again and she called
the doctor and they wanted to stop his continuous feeds for a while. He pulled that NG out a little later. I noticed
when it was out that it didn't look like it had been placed as far in as I normally place it. I asked the nurse if that was
as far as it was in and she said it was at 18cm. (I normally put it in at 25 or 26cm) So it wasn't in as far and it didn't
look like 18cm to me, it looked like a lot less. After she untaped it from his face she threw it away and left. Well, I
took it out of the trash and saw that the tape where it was place on him was only at about 9 or 10cm. That only
would've made it to around the back of his throat instead of his stomach. We were concerned that he may have
aspirated when he threw up so Robin called the doctor and they ordered an X-ray to make sure his lungs were
clear. The x-ray turned out ok.
Well he is doing ok. He finishes his antibiotic tonight. So maybe we may get to go home tomorrow after the PICC
line is put in. I will cross my fingers.
Also I would like to tell everyone that Levi got a new little cousin last night. My brother and his wife had their first
baby. It was a boy and weighed 9 pounds and 6 ounces. I can't wait to see him. They named him Lukas William.
Take care.
--------------------------------------------------------------------------------
TUESDAY, OCTOBER 09, 2007 11:43 PM, EDT
Today Levi got his PICC line. They had trouble getting an IV for the dye. He had one in his foot, but they had to
have one in the arm that they were going to place the PICC. It took them about an hour. I never really watched them
put in an IV, but I was watching today. They sedated him and gave him pain medicine before they started. Just
watching them I got a little dizzy and I told Robin that I felt like I was going to pass out. He said, "You look a little
pale." We had to go sit in their conference room. I felt like a dork. They finally got the IV in and was able to place
the PICC. It is in his left arm. The doctor told us today that we should be able to go home tomorrow. I will be so glad.
We have been here almost 4 weeks straight except for the 1 day we had at home before we had to come back. I
miss my bed and my babies. It will only be a short stay though because we go to Cincinnati on the 22nd. That is
only a week and a half away. I think we could do a week away from home on our heads though after being here for
that long already.
Thanks everyone for all the prayers. I love you all. I may not be able to keep this as updated once we are home
because I will have 3 other babies that will need my attention. I will try my best.
God Bless you all.
-------------------------------------------------------------------------------
THURSDAY, OCTOBER 11, 2007 11:21 PM, EDT
Well, we finally made it home. Levi is doing well. We went to visit his new little cousin today. He is so fat. Very cute
though. We all had a good time. I took all the boys. It was a little bit of normalcy in our lives.
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SUNDAY, OCTOBER 14, 2007 12:18 AM, EDT
We are still doing good. Levi has been doing really well. (Knock on Wood) Not too much to update you on now, but
just wanted you all to know that things were ok. Love y'all.
--------------------------------------------------------------------------------
SUNDAY, OCTOBER 14, 2007 01:39 PM, EDT
I took some new pics of Levi today after church. I also got a new one of the boys together. It is cute. As you can see
he is smiling a lot more now. He is easily made to goo and coo. You know, things that a normal baby does. He stays
awake a lot more too.
He threw up this morning. And out came his NG tube out his mouth. He is getting good at that. So I had to take it
out. It was right before church so I left it out and when we got home I snapped some pics before I had to put another
NG down. He looks so much cuter without that tape all over his face and a tube coming out of his nose.
Talk to y'all later.
Love ya.
Laurie
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TUESDAY, OCTOBER 16, 2007 12:29 PM, CDT
We are getting closer to the big day. Just 5 more days. We leave early Monday morning for Cincinnati. I am excited
and nervous. We are supposed to be there 5-7 days. That many days of tests and x-rays and I don't know what all.
I am glad to get this evaluation though because I know that it is one step closer to a transplant for Levi. Just me and
Robin and Levi are going. The other boys will be staying with Robin's family. They are wonderful. That is who has
kept the boys before on our many hospital stays. I miss them terrible, but I don't worry about them so much.
Talk to you all later.
Laurie
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THURSDAY, OCTOBER 18, 2007 06:34 PM, EDT
Well as if we didn't have enough to worry about with Levi. He now has croup. I took Toby(2) to the doctor on
Tuesday and he had it and now Levi has it. He ran afever yesterday and I was worried he had another line
infection. I talked to his nurse and doc in Lexington a couple of times yesterday. Since his fever never got that high
and he was coughing, he said to just take him to his pediatrition this morning. I did and they said it was croup. He
got prescribed an antibiotic Zithromax and a steroid. He has a really bad cough and sounds bad when he inhales
when he is crying. He has been pretty fussy today. The doc also said to use a humidifier to help with the breathing.
I didn't have one but had a nebulizer from when Toby was a baby and had to have breathing treatments. The doc
said that the 2nd and 3rd days are usually the worst so wish us luck.
Talk to you later.
Laurie
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MONDAY, OCTOBER 22, 2007 11:19 AM, EDT
Well, here it is Monday morning. THE BIG DAY! and guess where we are. No, we aren't at Cincinnati. We are back
at UK. Levi ran a really high fever yesterday and they said to bring him on in. It got up to a 103.5. That was a lot
higher than it was Tuesday with the croup. His gastroenterologist is trying to get in touch with Cincinnati, but we
haven't heard anything yet. They already pulled his PICC line last night and did a lot of cultures and labwork. They
also started a peripheral IV in his foot. They gave him Tylenol last night and his fever has subsided. They also
started him on vancomycin (another antibiotic) and dicontinued the Zithromax.
I don't understand. He was doing better. Saturday we were even able to go to Knoxville with him and the other boys
and spend a day at the zoo. He did really well. I didn't have him hooked up to his formula pump so we took bottles
for him and he did really well with it. He took about 4 bottles throughout the day at about 1/2 ounce each time. Once
he even took a whole ounce. I wanted to see if he would still take a bottle and how much he would tolerate. When
he has the pump going continuously he just doesn't seem to want to take the bottle. But he surprised me on how
well he did Saturday. But then yesterday morning he wouldn't take it and he felt really warm. I called his Lexington
doc and she said to bring him in and they would try to get him transferred to Cincinnati. She said she wanted them
to be in charge of placing his next line and she didn't want him to miss his eval appt. His appt was at 10:00am and it
is now 11:30am. The doc was in at about 8 this morning and she was supposed to be calling Cincinnati, but we
haven't heard anything since. I just asked the nurse if she could find out something for us.
I'll keep you all posted as I can. Thanks for keeping up with us. Keep on prayin'
Laurie
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TUESDAY, OCTOBER 23, 2007 02:22 PM, EDT
Well, Levi grew staph again. At least it isn't as bad a type as he had before. She said it was staph epidermidis. At
first she thought it may be a contaminant, but then all samples grew it so it looks like it was a line infection. BUT
they have already taken out the line this time. They drew more blood today to do cultures. He has been on
antibiotics since Sunday night so hopefully they will be negative.
Dr. Flomenhoft(GI doc) came by this morning and was really wanting Levi to get transferred to Cincy. She said she
wanted them to put in the next line. She hadn't heard from them yet, but was going to try desperately to get him in
there. A little later she came back and said Dr Kocochis(transplant head doc) said they couldn't take Levi with an
infection to do the eval. Some os the tests would yield results that would be useless. Dr Flomenhoft said she was
going to get him in up there as soon as possible. BUT I don't know if that meant as soon as his infection is cleared
or if they'll get him a new line here and send us home and make us another appt up there. I'll clear that up when I
see her next. She may not be sure herself yet what the plan is.
Also, Levi has been reaaly cranky today and last night. He acts like his belly hurts, but I am not sure. The only thing
I am sure is that he is hurting somewhere. He is only happy when I am holding him and even then he still cries when
he's awake. The only thing I can think of is that we tried something different with his feeds yesterday. We stopped
his NG feeds (he gets 7 mL/hr--about 1/4 of an ounce--that runs continuous). We wanted to see how he'd tolerate
bottle feeds. He said if he could get up to 1 ounce every 4 hours that it would be about the same amount that he
was getting through the NG. As long as he was keeping it down and wasn't having diarrhea he wouldn't have to
have the NG tube. I would really love to get rid of that thing, but he may just have to work up to it. Instead of getting
a smaller amount slowly he is getting all of it at once and it may be hurting his belly. Although, he isn't quite taking
an ounce (30 mL) every 4 hours. He only was taking about 15 mLs or a little less yesterday. And today only about 5
is all he'll take. I'm not going to force it on him. We'll go back to the NG feedings if that is easier for him. He just
won't take a bottle at all when he is getting it continuous. I have to stop it for a couple hours before to get him to
take a bottle. I just don't want him hating to eat.
--------------------------------------------------------------------------------
THURSDAY, OCTOBER 25, 2007 12:18 PM, CDT
Well, we should be able to go to Cincinnati. A resident doctor came in a bit ago and said that they have to get a
PICC in before he can go. A PICU nurse is going to come in at 1:00 and try, but if she can't then he is scheduled to
have one in the morning(9am) at the cath lab like he had before when he was sedated. So sooner or later we
should be able to go. Probably not til in the morning even if he gets it today. I am just glad we are going. Keep your
fingers crossed that the nurse will get it at 1pm. And pray it all goes ok.
Laurie
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THURSDAY, OCTOBER 25, 2007 03:14 PM, CDT
ANOTHER UPDATE TODAY!!
I just got a call from Cincinnati. He is scheduled to go up there Tuesday. She said she had talked to Dr. Flomehoft
(GI doc here) and she had said that once he gets his PICC that she will send us home until Tuesday. Then we will
go up there. I guess that is ok. We will have some more time at home, but it kinda screws with Robin's work and
school schedule. He had arranged this week off and now will have to scramble to get next week fixed. It is good that
he won't have to miss another clinical day. Which is Monday. I am sure it will work out, though.
Laurie
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FRIDAY, OCTOBER 26, 2007 09:17 PM, EDT
Guess where we are!!!
We made it back home. At least for a little while. We go to Cincinnati on Tuesday. He got another PICC line placed
today. It is in the same arm as before. He did well. They used a gas to put him to sleep. The most trouble thy had
was starting an IV for the dye to find the vein. I counted about 9 needle marks on one hand. And it is bruised up
pretty bad. He was asleep while they were doing it, but I know it still has to hurt when he wakes up.
He had some volunteers come by his room before he left with presents. They gave him a bunch of wildcat
(KENTUCKY WILDCATS) stuff. A couple of stuffed wildcats and a bib and a hat. He looks cute in his hat. I'll have to
post a pic of it.
Well, wish us an uneventful weekend. I'll see you all later.
Laurie
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MONDAY, OCTOBER 29, 2007 01:00 PM, EDT
AN UPDATE AND A THANK YOU!
Just wanted to update Levi's page before we leave tomorrow. I'm not sure if I will be able to get internet access
there or not. He is doing well. We are planning on leaving in the morning at 6am. We have to be there by 10 to get
admitted.
I have been feeding him a little rice cereal. He LOVES it! He still is getting his continuous feeds. I am able to give
him feeds with a bottle too, but he wouldn't take it the last couple of times. I been taking the amount of formula he is
supposed to get and thickening it up with rice cereal and feeding it to him with a spoon. He did this 2 times
yesterday. He had 1/2 oz each time so he took an extra ounce all day. It's good to be able to see him eat and enjoy
it.
I want to take this time to thank everyone.There are so many of you it is impossible to name you all, but know that if
Levi is in your heart, you are in ours.
All of your kind words have kept our spirits high. Without your prayers I don't know where we'd be. I also want to
thank God for sparing our little angel's life. He obviously has some big plan for him. I want to thank our families that
have been there for us through it all. Also our friends at work, Wal-Mart and LCMA. You have been more than just
friends, you have been family. Our church family has been wonderful. Thank you all. I want to especially thank
those of you I have never met. You don't even know us , but have felt the compassion to put us in you prayers.
Thanks to everyone. I cannot say it enough. Without your prayers and kindness, we wouldn't be able to make it.
WE LOVE YOU ALL!!
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TUESDAY, OCTOBER 30, 2007 12:37 PM, EDT
NO, I'M NOT JOKING!
We are NOT at Cincinnati!! Levi decided to run a fever again last night. So we had to come back to Lexington (UK
Children's). The original plan was to draw blood cultures and send him to Cincinnati this morning as long as he
didn't look septic. He got the temp about 4 yesterday aftenoon and I gave him some tylenol about 6:30pm. We got
here at about 9pm and his fever had went down by the time we got here and by midnight it was back to normal. Still
the plan was to send him this morning. The doctor talked to Cincinnati and Cincinnati called us and said that they
were still gonna take him. Well, just a few minutes later, the nurse told us that his cultures were growing gram
positive rods (don't know the specific bacteria yet, too soon). He was also acting like he was chilling, but didn't feel
warm yet. He was grunting and shaking. And about an hour and a half ago he started feeling warm again. The
nurse took his temp and it was 103.6. ARGHHHH!!!
We gave him some tylenol and put some cool washcloths on his head to bring down the fever. I haven't heard
anything else from the doctor, but I assume we aren't going because it is almost 1pm now. He will probably lose this
line too. That is just how things are going for us.
His fever has went down now and he is acting a little better, but still acts like he feels bad.
I just feel like Cincinnati keeps slipping through our fingers and we are helpless to stop it. I'm feeling pretty bummed
so if any of you have any words of encouragement, please leave a message on here or call 606-305-3929.
I'll update later if anything changes. Pray for us. I love you all.
Laurie
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WEDNESDAY, OCTOBER 31, 2007 03:54 PM, EDT
HAPPY HALLOWEEN!
Do you all like Levi's Halloween costume? They had a trick or treat here at the hospital. They had different stations
set up around the floor with toys and books and games. They even took pictures. Levi enjoyed getting out of the
room and vistiting everyone.
Levi has another bacteria growing in his blood from his intestines. This is one he hasn't had this kind yet. It is called
enterobacter. The gastroenterologist said he may have to start taking oral antibiotics to keep these type of
infections from occurring. They drew more cultures today.I talked to Cincinnati yesterday and they said as soon as
the infection is cleared, they will bring him up. They said they would check back Monday. BUT his gastroenterologist
is really pushing for him to get up there. She said that as soon as he has 24 hours of negative cultures, she wants
to send him. I think she would send him now if Cincinnati would take him. I'm not sure why Cincinnati can't take him
now. I know that they can't do the eval with the infection, but I don't know why they can't treat the infection there. I
am sure they have reasons. I guess they figure that since he is here already, he should stay here. So I don't know
when we will go for sure, but hopefully they won't be sending us back home. It may be Monday. I'll let you all know.
I did get some good news today. Our case worker from the medical card office called this morning and told us he
was approved. We have been waiting for this for so long!!! I can't tell you what a burden has been lifted from our
shoulders. Thank the Lord, he does listen to prayers.
Laurie
LEVI IS 3 MONTHS OLD TODAY!!!
Well, I just wanted to let you know what was going on today. Levi is doing ok.
The infectious disease doc said that his peripheral blood cultures were positive after 41 hours. He said he was
surprised. They drew more this a.m. and he said if they are still positive that they will need to do a heart ultrasound
to make sure that it isn't on his heart. He has had a heart US everytime he has had an infection. They heard a
murmur last time, but it was normal. This would make 3 he's had if they do it this time.
He lost the IV in his hand a little earlier. They put another one in his foot. The one in his hand infiltrated. He was
acting like it was hurting him and they took it out.
He seems like that made him feel better because he had been a little fussy all day today. Now he is napping. They
are going to put the PICC line in tomorrow. And that should last him until he gets his broviac in 4-5 days.
Other than that, not much has changed.
I have visitation at the funeral home tomorrow evening and Wednesday is the burial. So I will be away from Levi for
most of both days. I hope I can keep it together. I really loved my aunt. She was a big kid at heart. Al her nieces and
nephews loved her creativity (she was an artist). I will really miss her. But she has gone to a better place.
Thank you all for everything. It may be a couple of days before I update again. Take care.
--------------------------------------------------------------------------------
THURSDAY, OCTOBER 04, 2007 01:01 PM, EDT
Levi is doing ok. They didn't put the PICC line in yet. They are now saying that they want 1 week of neg cultures,
before they put in another broviac. Something was said about a PICC line on Saturday, but I am not sure. The week
will be up on Tuesday. So I guess his broviac line will come sometime shortly after that. I am not sure how long they
will keep us after the broviac is put in. I would like to go home before we head to Cincinnati. That evaluation is on
the 22nd. I have recieved a packet from them and have been reading over all the material. It is very interesting.
My aunt's funeral went well. I wrote a poem that another one of my cousin's read for me. It was really nice. It fit
perfectly. She was an artist and my sister had the idea that we could draw on her casket. A lot of her neices,
nephews, sisters, brothers and friends drew pictures and left messages on her casket with different color
permanent markers. It was really different, but she would have loved it!
I appreciate all of your prayers for me and my family. I love you all.
--------------------------------------------------------------------------------
FRIDAY, OCTOBER 05, 2007 12:08 PM, EDT
Dr. Shashidhar (GI) said this morning that they are planning on putting a PICC line in on Monday or Tuesday. They
would send us home with that for a while and bring him back for a broviac He said he knew we were going to
Cincinnati on the 22nd and they would bring him back for the broviac either right before we go or when we get back.
He also said I could try offering him a little rice cereal. A couple of tablespoons once a day. He just wanted to see
how he would tolerate it. I told him it would probably be interesting. He will be like, "What is that?!!" I'll let you know
how that goes. If I can I'll get a picture of the face he makes. I am sure it will be a good one.
Talk to you all later.
--------------------------------------------------------------------------------
MONDAY, OCTOBER 08, 2007 10:42 AM, EDT
We hope to get a PICC line in tomorrow. THey didn't have anyone that could do it today.
He had a rough weekend. Saturday morning he threw up quite a bit and when he did he threw up his NG tube out
his mouth. When I called the nurse she took it out and she placed another one. He threw up again and she called
the doctor and they wanted to stop his continuous feeds for a while. He pulled that NG out a little later. I noticed
when it was out that it didn't look like it had been placed as far in as I normally place it. I asked the nurse if that was
as far as it was in and she said it was at 18cm. (I normally put it in at 25 or 26cm) So it wasn't in as far and it didn't
look like 18cm to me, it looked like a lot less. After she untaped it from his face she threw it away and left. Well, I
took it out of the trash and saw that the tape where it was place on him was only at about 9 or 10cm. That only
would've made it to around the back of his throat instead of his stomach. We were concerned that he may have
aspirated when he threw up so Robin called the doctor and they ordered an X-ray to make sure his lungs were
clear. The x-ray turned out ok.
Well he is doing ok. He finishes his antibiotic tonight. So maybe we may get to go home tomorrow after the PICC
line is put in. I will cross my fingers.
Also I would like to tell everyone that Levi got a new little cousin last night. My brother and his wife had their first
baby. It was a boy and weighed 9 pounds and 6 ounces. I can't wait to see him. They named him Lukas William.
Take care.
--------------------------------------------------------------------------------
TUESDAY, OCTOBER 09, 2007 11:43 PM, EDT
Today Levi got his PICC line. They had trouble getting an IV for the dye. He had one in his foot, but they had to
have one in the arm that they were going to place the PICC. It took them about an hour. I never really watched them
put in an IV, but I was watching today. They sedated him and gave him pain medicine before they started. Just
watching them I got a little dizzy and I told Robin that I felt like I was going to pass out. He said, "You look a little
pale." We had to go sit in their conference room. I felt like a dork. They finally got the IV in and was able to place
the PICC. It is in his left arm. The doctor told us today that we should be able to go home tomorrow. I will be so glad.
We have been here almost 4 weeks straight except for the 1 day we had at home before we had to come back. I
miss my bed and my babies. It will only be a short stay though because we go to Cincinnati on the 22nd. That is
only a week and a half away. I think we could do a week away from home on our heads though after being here for
that long already.
Thanks everyone for all the prayers. I love you all. I may not be able to keep this as updated once we are home
because I will have 3 other babies that will need my attention. I will try my best.
God Bless you all.
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THURSDAY, OCTOBER 11, 2007 11:21 PM, EDT
Well, we finally made it home. Levi is doing well. We went to visit his new little cousin today. He is so fat. Very cute
though. We all had a good time. I took all the boys. It was a little bit of normalcy in our lives.
--------------------------------------------------------------------------------
SUNDAY, OCTOBER 14, 2007 12:18 AM, EDT
We are still doing good. Levi has been doing really well. (Knock on Wood) Not too much to update you on now, but
just wanted you all to know that things were ok. Love y'all.
--------------------------------------------------------------------------------
SUNDAY, OCTOBER 14, 2007 01:39 PM, EDT
I took some new pics of Levi today after church. I also got a new one of the boys together. It is cute. As you can see
he is smiling a lot more now. He is easily made to goo and coo. You know, things that a normal baby does. He stays
awake a lot more too.
He threw up this morning. And out came his NG tube out his mouth. He is getting good at that. So I had to take it
out. It was right before church so I left it out and when we got home I snapped some pics before I had to put another
NG down. He looks so much cuter without that tape all over his face and a tube coming out of his nose.
Talk to y'all later.
Love ya.
Laurie
--------------------------------------------------------------------------------
TUESDAY, OCTOBER 16, 2007 12:29 PM, CDT
We are getting closer to the big day. Just 5 more days. We leave early Monday morning for Cincinnati. I am excited
and nervous. We are supposed to be there 5-7 days. That many days of tests and x-rays and I don't know what all.
I am glad to get this evaluation though because I know that it is one step closer to a transplant for Levi. Just me and
Robin and Levi are going. The other boys will be staying with Robin's family. They are wonderful. That is who has
kept the boys before on our many hospital stays. I miss them terrible, but I don't worry about them so much.
Talk to you all later.
Laurie
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THURSDAY, OCTOBER 18, 2007 06:34 PM, EDT
Well as if we didn't have enough to worry about with Levi. He now has croup. I took Toby(2) to the doctor on
Tuesday and he had it and now Levi has it. He ran afever yesterday and I was worried he had another line
infection. I talked to his nurse and doc in Lexington a couple of times yesterday. Since his fever never got that high
and he was coughing, he said to just take him to his pediatrition this morning. I did and they said it was croup. He
got prescribed an antibiotic Zithromax and a steroid. He has a really bad cough and sounds bad when he inhales
when he is crying. He has been pretty fussy today. The doc also said to use a humidifier to help with the breathing.
I didn't have one but had a nebulizer from when Toby was a baby and had to have breathing treatments. The doc
said that the 2nd and 3rd days are usually the worst so wish us luck.
Talk to you later.
Laurie
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MONDAY, OCTOBER 22, 2007 11:19 AM, EDT
Well, here it is Monday morning. THE BIG DAY! and guess where we are. No, we aren't at Cincinnati. We are back
at UK. Levi ran a really high fever yesterday and they said to bring him on in. It got up to a 103.5. That was a lot
higher than it was Tuesday with the croup. His gastroenterologist is trying to get in touch with Cincinnati, but we
haven't heard anything yet. They already pulled his PICC line last night and did a lot of cultures and labwork. They
also started a peripheral IV in his foot. They gave him Tylenol last night and his fever has subsided. They also
started him on vancomycin (another antibiotic) and dicontinued the Zithromax.
I don't understand. He was doing better. Saturday we were even able to go to Knoxville with him and the other boys
and spend a day at the zoo. He did really well. I didn't have him hooked up to his formula pump so we took bottles
for him and he did really well with it. He took about 4 bottles throughout the day at about 1/2 ounce each time. Once
he even took a whole ounce. I wanted to see if he would still take a bottle and how much he would tolerate. When
he has the pump going continuously he just doesn't seem to want to take the bottle. But he surprised me on how
well he did Saturday. But then yesterday morning he wouldn't take it and he felt really warm. I called his Lexington
doc and she said to bring him in and they would try to get him transferred to Cincinnati. She said she wanted them
to be in charge of placing his next line and she didn't want him to miss his eval appt. His appt was at 10:00am and it
is now 11:30am. The doc was in at about 8 this morning and she was supposed to be calling Cincinnati, but we
haven't heard anything since. I just asked the nurse if she could find out something for us.
I'll keep you all posted as I can. Thanks for keeping up with us. Keep on prayin'
Laurie
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TUESDAY, OCTOBER 23, 2007 02:22 PM, EDT
Well, Levi grew staph again. At least it isn't as bad a type as he had before. She said it was staph epidermidis. At
first she thought it may be a contaminant, but then all samples grew it so it looks like it was a line infection. BUT
they have already taken out the line this time. They drew more blood today to do cultures. He has been on
antibiotics since Sunday night so hopefully they will be negative.
Dr. Flomenhoft(GI doc) came by this morning and was really wanting Levi to get transferred to Cincy. She said she
wanted them to put in the next line. She hadn't heard from them yet, but was going to try desperately to get him in
there. A little later she came back and said Dr Kocochis(transplant head doc) said they couldn't take Levi with an
infection to do the eval. Some os the tests would yield results that would be useless. Dr Flomenhoft said she was
going to get him in up there as soon as possible. BUT I don't know if that meant as soon as his infection is cleared
or if they'll get him a new line here and send us home and make us another appt up there. I'll clear that up when I
see her next. She may not be sure herself yet what the plan is.
Also, Levi has been reaaly cranky today and last night. He acts like his belly hurts, but I am not sure. The only thing
I am sure is that he is hurting somewhere. He is only happy when I am holding him and even then he still cries when
he's awake. The only thing I can think of is that we tried something different with his feeds yesterday. We stopped
his NG feeds (he gets 7 mL/hr--about 1/4 of an ounce--that runs continuous). We wanted to see how he'd tolerate
bottle feeds. He said if he could get up to 1 ounce every 4 hours that it would be about the same amount that he
was getting through the NG. As long as he was keeping it down and wasn't having diarrhea he wouldn't have to
have the NG tube. I would really love to get rid of that thing, but he may just have to work up to it. Instead of getting
a smaller amount slowly he is getting all of it at once and it may be hurting his belly. Although, he isn't quite taking
an ounce (30 mL) every 4 hours. He only was taking about 15 mLs or a little less yesterday. And today only about 5
is all he'll take. I'm not going to force it on him. We'll go back to the NG feedings if that is easier for him. He just
won't take a bottle at all when he is getting it continuous. I have to stop it for a couple hours before to get him to
take a bottle. I just don't want him hating to eat.
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THURSDAY, OCTOBER 25, 2007 12:18 PM, CDT
Well, we should be able to go to Cincinnati. A resident doctor came in a bit ago and said that they have to get a
PICC in before he can go. A PICU nurse is going to come in at 1:00 and try, but if she can't then he is scheduled to
have one in the morning(9am) at the cath lab like he had before when he was sedated. So sooner or later we
should be able to go. Probably not til in the morning even if he gets it today. I am just glad we are going. Keep your
fingers crossed that the nurse will get it at 1pm. And pray it all goes ok.
Laurie
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THURSDAY, OCTOBER 25, 2007 03:14 PM, CDT
ANOTHER UPDATE TODAY!!
I just got a call from Cincinnati. He is scheduled to go up there Tuesday. She said she had talked to Dr. Flomehoft
(GI doc here) and she had said that once he gets his PICC that she will send us home until Tuesday. Then we will
go up there. I guess that is ok. We will have some more time at home, but it kinda screws with Robin's work and
school schedule. He had arranged this week off and now will have to scramble to get next week fixed. It is good that
he won't have to miss another clinical day. Which is Monday. I am sure it will work out, though.
Laurie
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FRIDAY, OCTOBER 26, 2007 09:17 PM, EDT
Guess where we are!!!
We made it back home. At least for a little while. We go to Cincinnati on Tuesday. He got another PICC line placed
today. It is in the same arm as before. He did well. They used a gas to put him to sleep. The most trouble thy had
was starting an IV for the dye to find the vein. I counted about 9 needle marks on one hand. And it is bruised up
pretty bad. He was asleep while they were doing it, but I know it still has to hurt when he wakes up.
He had some volunteers come by his room before he left with presents. They gave him a bunch of wildcat
(KENTUCKY WILDCATS) stuff. A couple of stuffed wildcats and a bib and a hat. He looks cute in his hat. I'll have to
post a pic of it.
Well, wish us an uneventful weekend. I'll see you all later.
Laurie
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MONDAY, OCTOBER 29, 2007 01:00 PM, EDT
AN UPDATE AND A THANK YOU!
Just wanted to update Levi's page before we leave tomorrow. I'm not sure if I will be able to get internet access
there or not. He is doing well. We are planning on leaving in the morning at 6am. We have to be there by 10 to get
admitted.
I have been feeding him a little rice cereal. He LOVES it! He still is getting his continuous feeds. I am able to give
him feeds with a bottle too, but he wouldn't take it the last couple of times. I been taking the amount of formula he is
supposed to get and thickening it up with rice cereal and feeding it to him with a spoon. He did this 2 times
yesterday. He had 1/2 oz each time so he took an extra ounce all day. It's good to be able to see him eat and enjoy
it.
I want to take this time to thank everyone.There are so many of you it is impossible to name you all, but know that if
Levi is in your heart, you are in ours.
All of your kind words have kept our spirits high. Without your prayers I don't know where we'd be. I also want to
thank God for sparing our little angel's life. He obviously has some big plan for him. I want to thank our families that
have been there for us through it all. Also our friends at work, Wal-Mart and LCMA. You have been more than just
friends, you have been family. Our church family has been wonderful. Thank you all. I want to especially thank
those of you I have never met. You don't even know us , but have felt the compassion to put us in you prayers.
Thanks to everyone. I cannot say it enough. Without your prayers and kindness, we wouldn't be able to make it.
WE LOVE YOU ALL!!
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TUESDAY, OCTOBER 30, 2007 12:37 PM, EDT
NO, I'M NOT JOKING!
We are NOT at Cincinnati!! Levi decided to run a fever again last night. So we had to come back to Lexington (UK
Children's). The original plan was to draw blood cultures and send him to Cincinnati this morning as long as he
didn't look septic. He got the temp about 4 yesterday aftenoon and I gave him some tylenol about 6:30pm. We got
here at about 9pm and his fever had went down by the time we got here and by midnight it was back to normal. Still
the plan was to send him this morning. The doctor talked to Cincinnati and Cincinnati called us and said that they
were still gonna take him. Well, just a few minutes later, the nurse told us that his cultures were growing gram
positive rods (don't know the specific bacteria yet, too soon). He was also acting like he was chilling, but didn't feel
warm yet. He was grunting and shaking. And about an hour and a half ago he started feeling warm again. The
nurse took his temp and it was 103.6. ARGHHHH!!!
We gave him some tylenol and put some cool washcloths on his head to bring down the fever. I haven't heard
anything else from the doctor, but I assume we aren't going because it is almost 1pm now. He will probably lose this
line too. That is just how things are going for us.
His fever has went down now and he is acting a little better, but still acts like he feels bad.
I just feel like Cincinnati keeps slipping through our fingers and we are helpless to stop it. I'm feeling pretty bummed
so if any of you have any words of encouragement, please leave a message on here or call 606-305-3929.
I'll update later if anything changes. Pray for us. I love you all.
Laurie
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WEDNESDAY, OCTOBER 31, 2007 03:54 PM, EDT
HAPPY HALLOWEEN!
Do you all like Levi's Halloween costume? They had a trick or treat here at the hospital. They had different stations
set up around the floor with toys and books and games. They even took pictures. Levi enjoyed getting out of the
room and vistiting everyone.
Levi has another bacteria growing in his blood from his intestines. This is one he hasn't had this kind yet. It is called
enterobacter. The gastroenterologist said he may have to start taking oral antibiotics to keep these type of
infections from occurring. They drew more cultures today.I talked to Cincinnati yesterday and they said as soon as
the infection is cleared, they will bring him up. They said they would check back Monday. BUT his gastroenterologist
is really pushing for him to get up there. She said that as soon as he has 24 hours of negative cultures, she wants
to send him. I think she would send him now if Cincinnati would take him. I'm not sure why Cincinnati can't take him
now. I know that they can't do the eval with the infection, but I don't know why they can't treat the infection there. I
am sure they have reasons. I guess they figure that since he is here already, he should stay here. So I don't know
when we will go for sure, but hopefully they won't be sending us back home. It may be Monday. I'll let you all know.
I did get some good news today. Our case worker from the medical card office called this morning and told us he
was approved. We have been waiting for this for so long!!! I can't tell you what a burden has been lifted from our
shoulders. Thank the Lord, he does listen to prayers.
Laurie
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