TUESDAY, JANUARY 01, 2008 06:28 PM, EST
Well, the cultures are still negative!! Looks like it was just RSV! They wanna keep us 48 hours just to make sure. 48
hours will be up tomorrow at around 6pm. They asked if we would wanna stay since his appointment in Cincy is
Thursday at 1pm. I said yeah, since Robin has to work and I would have no way home tomorrow anyway. It would be
late before we got home and then have to turn around and leave again first thing Thursday. So, yes it's another
night, but I think we can handle it. I am just glad he's ok.
Take care. Hope your New Year started off right.
HUGS!!
Laurie
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FRIDAY, JANUARY 04, 2008 05:47 PM, EST
Well, we made it home. Sooner than I thought. Robin ended up taking Wednesday off and they said we could go as
long as his cultures were negative at 48 hours. So we left at about 8pm on Wednesday night. They did the labs Cincy
was wanting at the hospital so we didn't have to go up there Thursday. We have an appointment this coming
Thursday.
Cincy called yesterday to make the appointment and I found out something not so good. They said that since he
tested RSV positive, his status on the list was inactive. They want to see him weekly until he has a negative RSV test.
Once he has that (I hope that will be this Thursday), they will do more labs to get him active on the list again.
So I am glad it was just RSV and not a line infection, but I am disappointed that it inactivated him on the list. He is
sounding a lot better today, so hopefully he will be negative.
Robin's dad is still in the hospital so keep praying for him.
See you all later. Take care.
Laurie
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FRIDAY, JANUARY 11, 2008 07:09 PM, CST
More news, more news, more news....
NOT SO GOOD!!
Well, we had our doctor appointment yesterday at Cincinnati. It went ok. They said he had good weight gain not as
much as before, but considering he had RSV that was pretty good. Levi is still a little congested so they opted not to
activate him back on the list for another week. We got an appointment for next Thursday. The doc said it would be in
his best interest to wait. It he were to get an organ and he were to be RSV positive, it can be very bad. We agreed.
We want him to have the best chance possible when he gets his transplant.
Levi has been running a low grade fever for the past 2 or 3 days and I let them know, but we all assume it is from the
RSV.
Also, he has been pooping a lot more lately. (that has come along with increasing his feeds) And since his poopie is
very acidic, his bottom has gotten very raw. To the point it is bleeding. I feel so bad for him. I know it has to hurt really
bad. He screams every time I change his diaper. I have tried everything and I change him as soon as I know he has
gone. They gave us a couple of different creams to try and to use mineral oil and gauze instead of baby wipes. It
already looks better today.
Believe it or not that was good compared to what I have to say next...
We are in Cincinnati again today, except this time we are admitted. I know what you are thinking. "WHAT?!!!!" Yeah
he woke me up this morning with a temp of 104 under the arm and when you add the degree it is 105. I gave him
some Tylenol. Robin called in and we tried to get a hold of a doctor. Which is not easy at about 8 am. The hospital
won't page the doc on call and they tell you to call the clinic, but when you call the clinic you get a voicemail. It took
about an hour to talk to the doc. She said to take him to the ER in Somerset and she would have an ambulance pick
him up. For them to start antibiotics and draw blood and get things moving.
Well, about the time we got there (at the ER) she called back and said UK had no pediatric beds and no ICU beds
they were FULL, so they were going to call Cincinnati. So long story short, the helicopter from Somerset flew us (me
and Levi) up here. (My first helicopter ride!! It was awesome!!! Best part of the day.) He wasn't necessarily that sick
they just thought it to be much quicker than waiting 3 hours on an ambulance and then 3 hours back here. It only took
a little over an hour in the helicopter. His fever had went down a little at the ER. He slept the whole trip here.
Ok the usual workup. Blood cultures. They take 48 hours. So we are here at least until Monday. And that's if they are
negative. His blood also was low so he is getting a tranfusion as I write this. His blood level had been slowly dropping
and I thought there would be a possibility he would be transfused today anyway at home. The clinic was supposed to
call today and let me know. Oh, well. So I don't have a lot of answers right now, but I will be sure to update as soon as
I know anything else. It's a lot easier to get on here when your not chasing 4 kids.
Robin's dad is still at UK. Still needs your prayers. Keep us in your hearts. Looks like 2008 is shaping up to be one
like last year. 11 days into the year and we've been admitted twice.
Love y'all!
Laurie
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SATURDAY, JANUARY 12, 2008 10:29 AM, EST
Well, his cultures are growing gram negative rod bacteria. They said it may be enterobacter like he had before, but
it's too early to tell for certain. Well, we had a good run infection free. Hopefully they can clear this up without losing
the line, but I have my doubts. He always loses the line. Maybe they'll do something different here that will keep him
from losing it.
They said treatment is about 7 days so we are looking at about a week here. Hopefully it will clear up quick. He hasn't
ran a fever since yesterday morning. Which is good. He got his blood transfusion last night and he looks better today.
His heart rate and respirations have dropped since he got the blood so that is good. They were running pretty high.
Well keep your fingers crossed for us. We love you all. Take care.
Laurie
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SUNDAY, JANUARY 13, 2008 10:00 AM, EST
Well, after rounds this morning, I found out he is growing another bacteria. The first one was gram negative rods and
they identified it as enterobacter. The next one is gram positive cocci which is either staph epi or enterococcus. I am
betting it is enterococcus. That would make both the bacteria from his gut. The staph epi would be from the skin.
So they are adding another antibiotic and want to do a 10 day course. With 3 antibiotics going they don't want us to
send us home on that many so we are here through next Sunday.
Overall, he is doing fine. Just like he usually does. He runs a fever, but once they get him on antiiotics give him some
blood, he perks up. Which is good. I am glad he is feeling better.
They have tested him for RSV. They have to have 3 negative results to put him back on the list. They tested him
Friday and yesterday and Friday's was negative. I am not sure about yesterday, but it probably will be too. He hardly
has any symptoms now. They said this infection wouldn't keep him from being on the list as long as he wasn't running
a fever and had been on antibiotics a few days. So hopefully early this week he will be activated again.
Well, leave me a message to let me know you were here. It will give me something to read. As you can imagine, it gets
really boring here.
Love ya all,
Laurie
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MONDAY, JANUARY 14, 2008 11:48 AM, EST
Well, I got a little clarification this morning in rounds. They were doing the RSV tests for hospital purposes so they
didn't have to keep putting protection on every time they enter the room. That was not to get him back on the list.
They said as long as he's not having symptoms of it and he doesn't run any more fevers, they can probably put him
back on the list tomorrow. YEA!
Looks like the other bug was staph epi. They changed his antibiotics around a little because they got the sensitivities
back on the enterobacter. They want to start the 10 days of antibiotics yesterday because that was when he got
double coverage of antibiotics. So.... that means be here through next Tuesday. Yippy Skippy. We are just hanging
out. He is doing fine. I am gonna be so bored. Keep the messages coming. I'm gonna need them to keep my sanity.
Laurie
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TUESDAY, JANUARY 15, 2008 01:48 PM, EST
Good news for once:
At rounds today it was discussed that the staph epi that was growing was coming from the cultures drawn at
Somerset. They were not growing that here. So it was either a mistake or a contaminant. So we are back at 2
antibiotics. The nurse we see at the clinic here was at the rounds and asked if I would want to go home with antibiotics
and I said "Yeah, sure!" The attending doctor was a little hesitant. She said I know you are super mom already, but
you don't have to be a nurse by the bedside. It kinda made me mad. She must not know what all I do for him already. I
am his mom and his nurse. She was just worried I guess that I wouldn't be able to handle 2 antibiotics given IV at
home. One is 4 times a day and the other is 3 times a day. I don't doubt that it will keep me busy, but I would much
rather be home with the other boys. I have to be "super mom" to them too. I am sure she wasn't thinking of that. So
someone is supposed to be by later today to show me how to do the antibiotics at home. If it seems I can handle it,
then possibly go home on Thursday (or maybe tomorrow if we're lucky). If I don't think I can handle it, then it will be
next Tuesday morning.
Any ways, the cultures from yesterday and the day before are still negative and hopefully they will stay that way. If
one were to grow anything, that would probably change going home.
They gave Levi his flu shot today and his 6 month immunizations. I asked them to because they were due. They were
5 shots total. The nurse did an ingenius thing I had never seen. She brought in 5 others (some nursing students) to
help. 1 to hold the legs and each of the others had a shot. They gave the 4 in the leg at the same time and then the
flu shot in the arm was given right after. That way it seemed more to him he was only getting 2 shots instead of 5. I
thought that was a good idea. He cried for a bit, but I am sure it would've been much more tramatic to be poked 5
separate times. This way it happened all at once.
As far as the RSV test go they have had 2 negative results. One from Sat and one from SUN. (They must not have
done one on Fri. I thought they said they did, but I didn't actually see them do it because I had stepped out of the
room when Robin got here) So they did another one today which should be the last. Then they can quit gearing up
everytime they enter the room.
I also want to let you know of something that's in the works. 3 men (the preacher and 2 others) from church have
begun the process of starting a nonprofit foundation for Levi to take donations for him to help with medical bills and
etc for his well being now and in the future. I am really excited about it. It will relieve a lot of burden from us. I won't
have to worry about that for him anymore. Even when he's grown and on his own (God willing), he will have meds and
doctor visits. And I don't know what the insurance situation will be for him then. I want this to keep that burden from
him. It will be totally legal. They are going through a lawyer and getting a tax # and everything that way if someone
wants to get credit back on their taxes then they can. Those 3 men will be the directors. God Bless them for doing this
for us. It truly is a blessing to have such wonderful people in our lives. So thank you, Charles, Winston, and Ralph.
Pray that it goes good. If you have any suggestions for fundraisers send me an email lor12480@yahoo.com.
Also HE IS BACK ON THE LIST!!!
YEA!!!!
That's all the news for now. Sorry so long. Take care.
Laurie
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WEDNESDAY, JANUARY 16, 2008 11:35 AM, EST
Well things change so fast around here. They gave Levi his shots yesterday, right? He ran a fever during the night.
101.8 (102.8 when you add a degree) And I guess that's too high to say it's from the shots so they drew more blood
for cultures.
The attending doc said she spoke with Dr. K (Levi's doc up here--the transplant director) and he said he didn't feel
comfortable with us going home with that many antibiotics. The nurse from the clinic said they did the teaching with
me. So the attending said they still may send us home on them, but not before Saturday because of the cultures they
drew. They want to make sure they are negative. That little booger. He knew we might be going home and he spiked
a temp. I guess he wasn't ready to go. I am bummed. I was excited to be going home to see the boys. Oh, well this is
the rollercoaster we call life right now. I bought my ticket and I'm gonna finish the ride.
I'll let you know if things change. And I'm sure they will. They always do.
Laurie
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THURSDAY, JANUARY 17, 2008 01:06 PM, CST
After rounds yesterday, in the afternoon, Levi ran a fever again. So they did more blood cultures. They also did a
urine culture so he had to be cathed.
This morning they drew labs about 5am. They came back in about a hour or 2 and said his blood was low again and
they were doing a CBC and type and cross. The CBC to make sure the low blood wasn't a mistake and the type and
cross for the blood if he needed it. They thought it a little strange since he just got blood Friday. They were asking if I
saw any blood in his diaper. I said no. The only other thing I can think of that would cause him to need more blood
would be from the infection and/or all the blood they've been drawing for cultures, labs, etc. I guess they have drawn
quite a bit since we been here. The repeat CBC was still low so he will be getting some more blood shortly.
Also at rounds since he is back on the other antibiotic again they are going to keep us til Tuesday to finish the
antibiotics.
That's all for now.
Laurie
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FRIDAY, JANUARY 18, 2008 04:04 PM, EST
Nothing new today. Just keeping the antibiotics going. Discharge still planned for Tuesday. He feels a lot better today
than yesterday, I guess the blood perked him up. He's been laughing and playing. In such a good mood, except now
he is fighting me for all it's worth because he is sleepy and don't want to go to sleep. He's been up all morning and
wore himself out. Whatta crazy little guy!
Robin went back home today. He had to work today and the weekend. Pray I won't lose my sanity not having a grown
person to talk to.
Love y'all.
Laurie
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SATURDAY, JANUARY 19, 2008 07:08 PM, EST
No change with Levi today. Plans are the same--GO HOME TUESDAY! Boy, I hope so. I am getting so homesick. After
such a long stay at home, I got used to it and being around my boys all the time. Before it was only lke a week at a
time, since Levi was born. And now I have spent almost 2 months at home with them.
Also, I would like to say happy anniversary to my love of my life. (not our wedding anniversary) The anniversary of
when we started dating. I would've never thought we'd be where we are now with 4 kids. It's been 13 years we been
together. That's rare these days. Especially to be happy and still love each other as much as we do. I feel truly
blessed that we have each other. I was only 15, well almost 15 when he called me. And the rest is as they say
"history". I know things are tough now, but we have each other and what don't kill us will make us stronger.
Talk to you later.
Laurie
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TUESDAY, JANUARY 22, 2008 11:11 PM, EST
GET READY FOR YOUR JAW TO DROP!!>>>>>>>>>>>>>>>>>>>>>>>
Did we get discharged? YES! Did we make it home? NO!!!!
ARGHHHHHH! He finished his antibiotics last night. He was doing fine this morning. We got discharged and headed
home. We got to Lexington (we planned on stopping by to visit my father-in-law) and I noticed him grunting---like he
does when he's chilling from a fever. I told Robin, I am worried about him, I bet he has a fever. So when we got to the
hospital, I checked his temp and it was 99. Nothing to worry too much about, right? Well we started visiting and my
mother-in-law was holding him and said he feels warmer than he did when you got here. So I took it again and indeed
it was 101.5. I called the GI clinic at Cincy, but only got the nurses voicemail. Then Robin tried and got somebody.
They said come on back. YEA! WHooPEE! Yeah, right. Before we left I checked it again and it was 102.2.
By the time we got back, his temp had dropped and I hadn't given him anything. It was 99.5 when we checked in. I
can't believe this. It's like he just wanted to come back. Darned little toot. You gotta laugh about it, though. I am sad
that I didn't get to see my boys. I was looking forward to seeing their smiles. :(
So we got the same workup as before. Cultures, labs, blah,blah,blah... Probably won't know anything much til in the
morning or tomorrow evening.
Well, he beat his record of short times away from the hospital. Before, the shortest time away was 1 day. This time we
were gone a whole 6 hours. The only thing we did was go for a ride, visit Maw and Paw, head back and get a different
room with a smaller, harder bed and a different nurse. Oh, well, this is the life we live. And we have to make the best
of it. I just really miss the boys. And they can't even come visit because children under 14 aren't allowed to visit this
time of year because of flu and rsv season.
The room phone # is 513-636-9512 if anyone wants to call. I know some of you had the other number, but this one is
slightly different. I appreciate all that called it instead of the cell phone.
I'll update when I know more.
Laurie
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WEDNESDAY, JANUARY 23, 2008 01:18 PM, CST
His cultures are negative as of this morning. (The 12-hour preliminary) BUT They have to stay negative for 48 hours
to clear him. He hasn't had a fever since yesterday. They gave him a bolus ( a large amout of fluid given quickly) last
night. A bolus is usually what you get if you are getting dehydrated. It is IV fluid that is given rather quicky to
rehydrate you. They cathed him last night to get a urine sample to culture it also. It looked concentrated and some of
his numbers were high so that is why they give him the bolus. His numbers were improved this morning so it obviously
helped. But, they really aren't sure why he would've gotten dehydrated. He was off of his feeds while we were gone,
but they didn't think that short of time would've caused him to get dehydrated. Also he gets his TPN 24 hours a day
and that should supply all the fluid, minerals, etc he needs without any feeds. They are somewhat stumped on that
one.
The urine sample looked "dirty" they said, and is consistent with a urinary tract infection. But we still have to wait on
the culture to be sure. That is what they are leaning towards for now. If he does have a urinary infecton, they said
they will do some other kidney test to make sure they are working properly.
They will do rounds again around 5 or 6. By that time his cultures will be at 24 hours so they may have another
update on them. I will update later if anything changes. We are here for 48 hours at the least. Time will tell if it will be
longer.
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THURSDAY, JANUARY 24, 2008 01:42 PM, CST
Well all cultures are still negative. Even the urine. Hmphhhh.... They said as long as they stay that way through this
evening (48 hours) we can go home tomorrow. They are going to stop the antibiotics he's on now when the 48 hours
is up and start Bactrum (for urinary infections) in the morning. (But we will be able to go home with it. It's not an IV
antibiotic.) Also his blood level has dopped again. From 9.6 when we got here to 8.1. Again they asked if he was
bleeding and I said no. It happened last week too. If you ask me, I think it is from all the blood they draw for cultures,
labs and what-not. But I am not the doc. What do I know? So his blood isn't as low as it was last week, but they are
gonna give him some here in a minute that way we will be set before we leave. Hopefully we will make it home this time.
And thank you to all of you for wishing me a happy birthday. I appreciate it so much. I know it's not the ideal way to be
spending my birthday, but it could be worse is how I look at it. I could feel sorry for myself and say "Oh, this is the
worst birthday ever," or I can enjoy it as a day that I have with Levi. 6 months ago I wasn't sure I would even have him
this long. So I see it as a blessing. I am happy I am here with him and not at home grieving the loss of my baby.
Love you all.
Laurie
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FRIDAY, JANUARY 25, 2008 09:10 AM, EST
Hi, everybody!
Today is supposed to be the day. They haven't rounded yet, but a couple of the GI fellowes have been in and talked
to me. They said the ultrasound he had yesterday of his kidneys DID show signs of infection. So..... they want to do
another test. They said they do it with all boys that are under 2 that have an infection in the kidneys/bladder. They
want to try to get it done today, but said if they can't get it scheduled today then they can do it another day and we
wouldn't have to stay. It is a test of the bladder where they run dye through. They want to make sure nothing is
backing up from the bladder to the kidneys causing the kidney infection. I'm sure it's not. He just got cathed 2 times
last week for urine cultures and don't you think it would be more likely that some bacteria got in that way? Oh, well. I
think they are doing it more of a "just to be sure" reason than that they expect to find something.
So I asked when we would be able to leave. She said we could leave as soon as the test was done if they were able
to schedule it today. She said we would probably be here for rounds(11am-ish), but she would talk to the attending
and see if they could get things going before. So I probably won't update again until we get home---unless (knock on
wood) something keeps us from getting there. Levi, I'm talking to you!!
See you all soon.
Oh, I have a huge favor to ask of all of you. You all have been wonderful to me and Levi and the whole family. Your
kind words, prayers and support have gotten us through. I want to ask you to do the same for another little boy. He is
slightly older than Levi. He turned a year old in October. He got his transplant in August. He has been back in the
hospital since with complications and they have just now determined that he is in rejection. They aren't sure yet if they
will be able to treat it. I feel so bad for the mom and the family. I have read her entire journal and it is like reading my
own. This little boy had infection after infection before transplant and now that he's finally gotten it, his body is
rejecting it. I can only imagine how she must feel. So do whatever you have done for little Levi. Say a prayer, leave a
kind message, put him on your prayer list, whatever you think might help. If she's like me she enjoys a few words of
love and encouragement especially when times are at their worst. Thanks.
His caringbridge page is
www.caringbridge.org/visit/devintoledo
Take time to read some if not all the journal entries. He's cute as a button and I wish him and his family all the best.
Thank you guys. I love you'uns.
Laurie
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SATURDAY, JANUARY 26, 2008 06:38 PM, EST
Home Sweet Home!!
We made it!!
Levi had the dye test and everything turned out ok. So more than likely it was a urinary infection. They sent him home
with antibiotic for that. All is good so far. Knock on wood.
If you didn't read yesterday's update. I would like to ask you all again to pray for Devin.
www.caringbridge.org/visit/devintoledo
Later,
Laurie
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WEDNESDAY, JANUARY 30, 2008 08:24 PM, EST
I just wanted to update real quick. Levi has been doing ok this week. We are trying to get back in our routine. Levi
has been on a lot of antibiotics and it has been hard trying to give them to him without making him throw up. He gets
them twice a day. He is on the profilactic(sp) antibiotics and the antibiotic they put him on for tyhe supposed urinary
infection. Plus he gets a med for his liver and the fish oil. I will be glad when he gets off this 2 week round of
antibiotics. I haven't been able to increase his feeds.
We go back to the doctor tomorrow so I will update if we find out anything.
Also just something that might make you smile: I broke out the boy's walker and thought I would let Levi try it out. His
legs are very weak. He will barely try to stand when you hold him upright. I guess where he has been in the hospital
bed for so long and someone is always holding him, he's gotten a little behind. He sits pretty well and he is where he
is supposed to be developmentally in everything else as far as I can tell. He isn't trying to crawl or anything either. I
guess he will have to be carried around a little longer than most babies, but that's ok since he weighs a lot less than
most babies his age. Anyways back to the walker. I got a little side track. when I put him in it, his little legs are about
4-5 inches too short. Even on the lowest setting. It's cute. He likes being in to play with his toys. But so much for
working out his legs.
C-ya later
Laurie
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THURSDAY, JANUARY 31, 2008 10:41 PM, EST
Levi will be 7 months old tomorrow!!!
The appointment went well. He weighs 13 pounds 4 ounces now. He had gained a little, but they said they would like
for him to be gaining more. They increased the amount of sugar in his TPN to give him more calories to help him gain
more weight. They also adjusted some of his other medicines too, based on him weighing more than he did a month
or so ago.
We asked about his development. They are going to set him up to be evaluated to see if he may need any therapy.
The doc also said that sometimes babies on TPN like him may get Rickets or have brittle bones. He said he might get
a small fracture in his leg and not want to extend it because it may hurt. But he stretched them out and Levi didn't
seem bothered at all. He just likes to keep his legs curled up. So he ordered him some xrays of all his bones to see if
maybe that was why he isn't wanting to put weight on them. I guess we will find out the results at next appointment.
We go back in 2 weeks on Valentine's Day.
The bloodwork they did yesterday looked good. His blood level was good. So I was glad to hear that. Imagine that. His
blood level didn't drop when they didn't draw blood every day. lol.
Talk to you all later.
Oh, yeah. Little Devin is still hangin' in there. He is doing a little better. Keep praying. We know that works wonders.
Laurie
Well, the cultures are still negative!! Looks like it was just RSV! They wanna keep us 48 hours just to make sure. 48
hours will be up tomorrow at around 6pm. They asked if we would wanna stay since his appointment in Cincy is
Thursday at 1pm. I said yeah, since Robin has to work and I would have no way home tomorrow anyway. It would be
late before we got home and then have to turn around and leave again first thing Thursday. So, yes it's another
night, but I think we can handle it. I am just glad he's ok.
Take care. Hope your New Year started off right.
HUGS!!
Laurie
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FRIDAY, JANUARY 04, 2008 05:47 PM, EST
Well, we made it home. Sooner than I thought. Robin ended up taking Wednesday off and they said we could go as
long as his cultures were negative at 48 hours. So we left at about 8pm on Wednesday night. They did the labs Cincy
was wanting at the hospital so we didn't have to go up there Thursday. We have an appointment this coming
Thursday.
Cincy called yesterday to make the appointment and I found out something not so good. They said that since he
tested RSV positive, his status on the list was inactive. They want to see him weekly until he has a negative RSV test.
Once he has that (I hope that will be this Thursday), they will do more labs to get him active on the list again.
So I am glad it was just RSV and not a line infection, but I am disappointed that it inactivated him on the list. He is
sounding a lot better today, so hopefully he will be negative.
Robin's dad is still in the hospital so keep praying for him.
See you all later. Take care.
Laurie
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FRIDAY, JANUARY 11, 2008 07:09 PM, CST
More news, more news, more news....
NOT SO GOOD!!
Well, we had our doctor appointment yesterday at Cincinnati. It went ok. They said he had good weight gain not as
much as before, but considering he had RSV that was pretty good. Levi is still a little congested so they opted not to
activate him back on the list for another week. We got an appointment for next Thursday. The doc said it would be in
his best interest to wait. It he were to get an organ and he were to be RSV positive, it can be very bad. We agreed.
We want him to have the best chance possible when he gets his transplant.
Levi has been running a low grade fever for the past 2 or 3 days and I let them know, but we all assume it is from the
RSV.
Also, he has been pooping a lot more lately. (that has come along with increasing his feeds) And since his poopie is
very acidic, his bottom has gotten very raw. To the point it is bleeding. I feel so bad for him. I know it has to hurt really
bad. He screams every time I change his diaper. I have tried everything and I change him as soon as I know he has
gone. They gave us a couple of different creams to try and to use mineral oil and gauze instead of baby wipes. It
already looks better today.
Believe it or not that was good compared to what I have to say next...
We are in Cincinnati again today, except this time we are admitted. I know what you are thinking. "WHAT?!!!!" Yeah
he woke me up this morning with a temp of 104 under the arm and when you add the degree it is 105. I gave him
some Tylenol. Robin called in and we tried to get a hold of a doctor. Which is not easy at about 8 am. The hospital
won't page the doc on call and they tell you to call the clinic, but when you call the clinic you get a voicemail. It took
about an hour to talk to the doc. She said to take him to the ER in Somerset and she would have an ambulance pick
him up. For them to start antibiotics and draw blood and get things moving.
Well, about the time we got there (at the ER) she called back and said UK had no pediatric beds and no ICU beds
they were FULL, so they were going to call Cincinnati. So long story short, the helicopter from Somerset flew us (me
and Levi) up here. (My first helicopter ride!! It was awesome!!! Best part of the day.) He wasn't necessarily that sick
they just thought it to be much quicker than waiting 3 hours on an ambulance and then 3 hours back here. It only took
a little over an hour in the helicopter. His fever had went down a little at the ER. He slept the whole trip here.
Ok the usual workup. Blood cultures. They take 48 hours. So we are here at least until Monday. And that's if they are
negative. His blood also was low so he is getting a tranfusion as I write this. His blood level had been slowly dropping
and I thought there would be a possibility he would be transfused today anyway at home. The clinic was supposed to
call today and let me know. Oh, well. So I don't have a lot of answers right now, but I will be sure to update as soon as
I know anything else. It's a lot easier to get on here when your not chasing 4 kids.
Robin's dad is still at UK. Still needs your prayers. Keep us in your hearts. Looks like 2008 is shaping up to be one
like last year. 11 days into the year and we've been admitted twice.
Love y'all!
Laurie
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SATURDAY, JANUARY 12, 2008 10:29 AM, EST
Well, his cultures are growing gram negative rod bacteria. They said it may be enterobacter like he had before, but
it's too early to tell for certain. Well, we had a good run infection free. Hopefully they can clear this up without losing
the line, but I have my doubts. He always loses the line. Maybe they'll do something different here that will keep him
from losing it.
They said treatment is about 7 days so we are looking at about a week here. Hopefully it will clear up quick. He hasn't
ran a fever since yesterday morning. Which is good. He got his blood transfusion last night and he looks better today.
His heart rate and respirations have dropped since he got the blood so that is good. They were running pretty high.
Well keep your fingers crossed for us. We love you all. Take care.
Laurie
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SUNDAY, JANUARY 13, 2008 10:00 AM, EST
Well, after rounds this morning, I found out he is growing another bacteria. The first one was gram negative rods and
they identified it as enterobacter. The next one is gram positive cocci which is either staph epi or enterococcus. I am
betting it is enterococcus. That would make both the bacteria from his gut. The staph epi would be from the skin.
So they are adding another antibiotic and want to do a 10 day course. With 3 antibiotics going they don't want us to
send us home on that many so we are here through next Sunday.
Overall, he is doing fine. Just like he usually does. He runs a fever, but once they get him on antiiotics give him some
blood, he perks up. Which is good. I am glad he is feeling better.
They have tested him for RSV. They have to have 3 negative results to put him back on the list. They tested him
Friday and yesterday and Friday's was negative. I am not sure about yesterday, but it probably will be too. He hardly
has any symptoms now. They said this infection wouldn't keep him from being on the list as long as he wasn't running
a fever and had been on antibiotics a few days. So hopefully early this week he will be activated again.
Well, leave me a message to let me know you were here. It will give me something to read. As you can imagine, it gets
really boring here.
Love ya all,
Laurie
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MONDAY, JANUARY 14, 2008 11:48 AM, EST
Well, I got a little clarification this morning in rounds. They were doing the RSV tests for hospital purposes so they
didn't have to keep putting protection on every time they enter the room. That was not to get him back on the list.
They said as long as he's not having symptoms of it and he doesn't run any more fevers, they can probably put him
back on the list tomorrow. YEA!
Looks like the other bug was staph epi. They changed his antibiotics around a little because they got the sensitivities
back on the enterobacter. They want to start the 10 days of antibiotics yesterday because that was when he got
double coverage of antibiotics. So.... that means be here through next Tuesday. Yippy Skippy. We are just hanging
out. He is doing fine. I am gonna be so bored. Keep the messages coming. I'm gonna need them to keep my sanity.
Laurie
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TUESDAY, JANUARY 15, 2008 01:48 PM, EST
Good news for once:
At rounds today it was discussed that the staph epi that was growing was coming from the cultures drawn at
Somerset. They were not growing that here. So it was either a mistake or a contaminant. So we are back at 2
antibiotics. The nurse we see at the clinic here was at the rounds and asked if I would want to go home with antibiotics
and I said "Yeah, sure!" The attending doctor was a little hesitant. She said I know you are super mom already, but
you don't have to be a nurse by the bedside. It kinda made me mad. She must not know what all I do for him already. I
am his mom and his nurse. She was just worried I guess that I wouldn't be able to handle 2 antibiotics given IV at
home. One is 4 times a day and the other is 3 times a day. I don't doubt that it will keep me busy, but I would much
rather be home with the other boys. I have to be "super mom" to them too. I am sure she wasn't thinking of that. So
someone is supposed to be by later today to show me how to do the antibiotics at home. If it seems I can handle it,
then possibly go home on Thursday (or maybe tomorrow if we're lucky). If I don't think I can handle it, then it will be
next Tuesday morning.
Any ways, the cultures from yesterday and the day before are still negative and hopefully they will stay that way. If
one were to grow anything, that would probably change going home.
They gave Levi his flu shot today and his 6 month immunizations. I asked them to because they were due. They were
5 shots total. The nurse did an ingenius thing I had never seen. She brought in 5 others (some nursing students) to
help. 1 to hold the legs and each of the others had a shot. They gave the 4 in the leg at the same time and then the
flu shot in the arm was given right after. That way it seemed more to him he was only getting 2 shots instead of 5. I
thought that was a good idea. He cried for a bit, but I am sure it would've been much more tramatic to be poked 5
separate times. This way it happened all at once.
As far as the RSV test go they have had 2 negative results. One from Sat and one from SUN. (They must not have
done one on Fri. I thought they said they did, but I didn't actually see them do it because I had stepped out of the
room when Robin got here) So they did another one today which should be the last. Then they can quit gearing up
everytime they enter the room.
I also want to let you know of something that's in the works. 3 men (the preacher and 2 others) from church have
begun the process of starting a nonprofit foundation for Levi to take donations for him to help with medical bills and
etc for his well being now and in the future. I am really excited about it. It will relieve a lot of burden from us. I won't
have to worry about that for him anymore. Even when he's grown and on his own (God willing), he will have meds and
doctor visits. And I don't know what the insurance situation will be for him then. I want this to keep that burden from
him. It will be totally legal. They are going through a lawyer and getting a tax # and everything that way if someone
wants to get credit back on their taxes then they can. Those 3 men will be the directors. God Bless them for doing this
for us. It truly is a blessing to have such wonderful people in our lives. So thank you, Charles, Winston, and Ralph.
Pray that it goes good. If you have any suggestions for fundraisers send me an email lor12480@yahoo.com.
Also HE IS BACK ON THE LIST!!!
YEA!!!!
That's all the news for now. Sorry so long. Take care.
Laurie
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WEDNESDAY, JANUARY 16, 2008 11:35 AM, EST
Well things change so fast around here. They gave Levi his shots yesterday, right? He ran a fever during the night.
101.8 (102.8 when you add a degree) And I guess that's too high to say it's from the shots so they drew more blood
for cultures.
The attending doc said she spoke with Dr. K (Levi's doc up here--the transplant director) and he said he didn't feel
comfortable with us going home with that many antibiotics. The nurse from the clinic said they did the teaching with
me. So the attending said they still may send us home on them, but not before Saturday because of the cultures they
drew. They want to make sure they are negative. That little booger. He knew we might be going home and he spiked
a temp. I guess he wasn't ready to go. I am bummed. I was excited to be going home to see the boys. Oh, well this is
the rollercoaster we call life right now. I bought my ticket and I'm gonna finish the ride.
I'll let you know if things change. And I'm sure they will. They always do.
Laurie
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THURSDAY, JANUARY 17, 2008 01:06 PM, CST
After rounds yesterday, in the afternoon, Levi ran a fever again. So they did more blood cultures. They also did a
urine culture so he had to be cathed.
This morning they drew labs about 5am. They came back in about a hour or 2 and said his blood was low again and
they were doing a CBC and type and cross. The CBC to make sure the low blood wasn't a mistake and the type and
cross for the blood if he needed it. They thought it a little strange since he just got blood Friday. They were asking if I
saw any blood in his diaper. I said no. The only other thing I can think of that would cause him to need more blood
would be from the infection and/or all the blood they've been drawing for cultures, labs, etc. I guess they have drawn
quite a bit since we been here. The repeat CBC was still low so he will be getting some more blood shortly.
Also at rounds since he is back on the other antibiotic again they are going to keep us til Tuesday to finish the
antibiotics.
That's all for now.
Laurie
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FRIDAY, JANUARY 18, 2008 04:04 PM, EST
Nothing new today. Just keeping the antibiotics going. Discharge still planned for Tuesday. He feels a lot better today
than yesterday, I guess the blood perked him up. He's been laughing and playing. In such a good mood, except now
he is fighting me for all it's worth because he is sleepy and don't want to go to sleep. He's been up all morning and
wore himself out. Whatta crazy little guy!
Robin went back home today. He had to work today and the weekend. Pray I won't lose my sanity not having a grown
person to talk to.
Love y'all.
Laurie
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SATURDAY, JANUARY 19, 2008 07:08 PM, EST
No change with Levi today. Plans are the same--GO HOME TUESDAY! Boy, I hope so. I am getting so homesick. After
such a long stay at home, I got used to it and being around my boys all the time. Before it was only lke a week at a
time, since Levi was born. And now I have spent almost 2 months at home with them.
Also, I would like to say happy anniversary to my love of my life. (not our wedding anniversary) The anniversary of
when we started dating. I would've never thought we'd be where we are now with 4 kids. It's been 13 years we been
together. That's rare these days. Especially to be happy and still love each other as much as we do. I feel truly
blessed that we have each other. I was only 15, well almost 15 when he called me. And the rest is as they say
"history". I know things are tough now, but we have each other and what don't kill us will make us stronger.
Talk to you later.
Laurie
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TUESDAY, JANUARY 22, 2008 11:11 PM, EST
GET READY FOR YOUR JAW TO DROP!!>>>>>>>>>>>>>>>>>>>>>>>
Did we get discharged? YES! Did we make it home? NO!!!!
ARGHHHHHH! He finished his antibiotics last night. He was doing fine this morning. We got discharged and headed
home. We got to Lexington (we planned on stopping by to visit my father-in-law) and I noticed him grunting---like he
does when he's chilling from a fever. I told Robin, I am worried about him, I bet he has a fever. So when we got to the
hospital, I checked his temp and it was 99. Nothing to worry too much about, right? Well we started visiting and my
mother-in-law was holding him and said he feels warmer than he did when you got here. So I took it again and indeed
it was 101.5. I called the GI clinic at Cincy, but only got the nurses voicemail. Then Robin tried and got somebody.
They said come on back. YEA! WHooPEE! Yeah, right. Before we left I checked it again and it was 102.2.
By the time we got back, his temp had dropped and I hadn't given him anything. It was 99.5 when we checked in. I
can't believe this. It's like he just wanted to come back. Darned little toot. You gotta laugh about it, though. I am sad
that I didn't get to see my boys. I was looking forward to seeing their smiles. :(
So we got the same workup as before. Cultures, labs, blah,blah,blah... Probably won't know anything much til in the
morning or tomorrow evening.
Well, he beat his record of short times away from the hospital. Before, the shortest time away was 1 day. This time we
were gone a whole 6 hours. The only thing we did was go for a ride, visit Maw and Paw, head back and get a different
room with a smaller, harder bed and a different nurse. Oh, well, this is the life we live. And we have to make the best
of it. I just really miss the boys. And they can't even come visit because children under 14 aren't allowed to visit this
time of year because of flu and rsv season.
The room phone # is 513-636-9512 if anyone wants to call. I know some of you had the other number, but this one is
slightly different. I appreciate all that called it instead of the cell phone.
I'll update when I know more.
Laurie
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WEDNESDAY, JANUARY 23, 2008 01:18 PM, CST
His cultures are negative as of this morning. (The 12-hour preliminary) BUT They have to stay negative for 48 hours
to clear him. He hasn't had a fever since yesterday. They gave him a bolus ( a large amout of fluid given quickly) last
night. A bolus is usually what you get if you are getting dehydrated. It is IV fluid that is given rather quicky to
rehydrate you. They cathed him last night to get a urine sample to culture it also. It looked concentrated and some of
his numbers were high so that is why they give him the bolus. His numbers were improved this morning so it obviously
helped. But, they really aren't sure why he would've gotten dehydrated. He was off of his feeds while we were gone,
but they didn't think that short of time would've caused him to get dehydrated. Also he gets his TPN 24 hours a day
and that should supply all the fluid, minerals, etc he needs without any feeds. They are somewhat stumped on that
one.
The urine sample looked "dirty" they said, and is consistent with a urinary tract infection. But we still have to wait on
the culture to be sure. That is what they are leaning towards for now. If he does have a urinary infecton, they said
they will do some other kidney test to make sure they are working properly.
They will do rounds again around 5 or 6. By that time his cultures will be at 24 hours so they may have another
update on them. I will update later if anything changes. We are here for 48 hours at the least. Time will tell if it will be
longer.
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THURSDAY, JANUARY 24, 2008 01:42 PM, CST
Well all cultures are still negative. Even the urine. Hmphhhh.... They said as long as they stay that way through this
evening (48 hours) we can go home tomorrow. They are going to stop the antibiotics he's on now when the 48 hours
is up and start Bactrum (for urinary infections) in the morning. (But we will be able to go home with it. It's not an IV
antibiotic.) Also his blood level has dopped again. From 9.6 when we got here to 8.1. Again they asked if he was
bleeding and I said no. It happened last week too. If you ask me, I think it is from all the blood they draw for cultures,
labs and what-not. But I am not the doc. What do I know? So his blood isn't as low as it was last week, but they are
gonna give him some here in a minute that way we will be set before we leave. Hopefully we will make it home this time.
And thank you to all of you for wishing me a happy birthday. I appreciate it so much. I know it's not the ideal way to be
spending my birthday, but it could be worse is how I look at it. I could feel sorry for myself and say "Oh, this is the
worst birthday ever," or I can enjoy it as a day that I have with Levi. 6 months ago I wasn't sure I would even have him
this long. So I see it as a blessing. I am happy I am here with him and not at home grieving the loss of my baby.
Love you all.
Laurie
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FRIDAY, JANUARY 25, 2008 09:10 AM, EST
Hi, everybody!
Today is supposed to be the day. They haven't rounded yet, but a couple of the GI fellowes have been in and talked
to me. They said the ultrasound he had yesterday of his kidneys DID show signs of infection. So..... they want to do
another test. They said they do it with all boys that are under 2 that have an infection in the kidneys/bladder. They
want to try to get it done today, but said if they can't get it scheduled today then they can do it another day and we
wouldn't have to stay. It is a test of the bladder where they run dye through. They want to make sure nothing is
backing up from the bladder to the kidneys causing the kidney infection. I'm sure it's not. He just got cathed 2 times
last week for urine cultures and don't you think it would be more likely that some bacteria got in that way? Oh, well. I
think they are doing it more of a "just to be sure" reason than that they expect to find something.
So I asked when we would be able to leave. She said we could leave as soon as the test was done if they were able
to schedule it today. She said we would probably be here for rounds(11am-ish), but she would talk to the attending
and see if they could get things going before. So I probably won't update again until we get home---unless (knock on
wood) something keeps us from getting there. Levi, I'm talking to you!!
See you all soon.
Oh, I have a huge favor to ask of all of you. You all have been wonderful to me and Levi and the whole family. Your
kind words, prayers and support have gotten us through. I want to ask you to do the same for another little boy. He is
slightly older than Levi. He turned a year old in October. He got his transplant in August. He has been back in the
hospital since with complications and they have just now determined that he is in rejection. They aren't sure yet if they
will be able to treat it. I feel so bad for the mom and the family. I have read her entire journal and it is like reading my
own. This little boy had infection after infection before transplant and now that he's finally gotten it, his body is
rejecting it. I can only imagine how she must feel. So do whatever you have done for little Levi. Say a prayer, leave a
kind message, put him on your prayer list, whatever you think might help. If she's like me she enjoys a few words of
love and encouragement especially when times are at their worst. Thanks.
His caringbridge page is
www.caringbridge.org/visit/devintoledo
Take time to read some if not all the journal entries. He's cute as a button and I wish him and his family all the best.
Thank you guys. I love you'uns.
Laurie
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SATURDAY, JANUARY 26, 2008 06:38 PM, EST
Home Sweet Home!!
We made it!!
Levi had the dye test and everything turned out ok. So more than likely it was a urinary infection. They sent him home
with antibiotic for that. All is good so far. Knock on wood.
If you didn't read yesterday's update. I would like to ask you all again to pray for Devin.
www.caringbridge.org/visit/devintoledo
Later,
Laurie
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WEDNESDAY, JANUARY 30, 2008 08:24 PM, EST
I just wanted to update real quick. Levi has been doing ok this week. We are trying to get back in our routine. Levi
has been on a lot of antibiotics and it has been hard trying to give them to him without making him throw up. He gets
them twice a day. He is on the profilactic(sp) antibiotics and the antibiotic they put him on for tyhe supposed urinary
infection. Plus he gets a med for his liver and the fish oil. I will be glad when he gets off this 2 week round of
antibiotics. I haven't been able to increase his feeds.
We go back to the doctor tomorrow so I will update if we find out anything.
Also just something that might make you smile: I broke out the boy's walker and thought I would let Levi try it out. His
legs are very weak. He will barely try to stand when you hold him upright. I guess where he has been in the hospital
bed for so long and someone is always holding him, he's gotten a little behind. He sits pretty well and he is where he
is supposed to be developmentally in everything else as far as I can tell. He isn't trying to crawl or anything either. I
guess he will have to be carried around a little longer than most babies, but that's ok since he weighs a lot less than
most babies his age. Anyways back to the walker. I got a little side track. when I put him in it, his little legs are about
4-5 inches too short. Even on the lowest setting. It's cute. He likes being in to play with his toys. But so much for
working out his legs.
C-ya later
Laurie
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THURSDAY, JANUARY 31, 2008 10:41 PM, EST
Levi will be 7 months old tomorrow!!!
The appointment went well. He weighs 13 pounds 4 ounces now. He had gained a little, but they said they would like
for him to be gaining more. They increased the amount of sugar in his TPN to give him more calories to help him gain
more weight. They also adjusted some of his other medicines too, based on him weighing more than he did a month
or so ago.
We asked about his development. They are going to set him up to be evaluated to see if he may need any therapy.
The doc also said that sometimes babies on TPN like him may get Rickets or have brittle bones. He said he might get
a small fracture in his leg and not want to extend it because it may hurt. But he stretched them out and Levi didn't
seem bothered at all. He just likes to keep his legs curled up. So he ordered him some xrays of all his bones to see if
maybe that was why he isn't wanting to put weight on them. I guess we will find out the results at next appointment.
We go back in 2 weeks on Valentine's Day.
The bloodwork they did yesterday looked good. His blood level was good. So I was glad to hear that. Imagine that. His
blood level didn't drop when they didn't draw blood every day. lol.
Talk to you all later.
Oh, yeah. Little Devin is still hangin' in there. He is doing a little better. Keep praying. We know that works wonders.
Laurie
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