FRIDAY, FEBRUARY 01, 2008 10:12 PM, EST
7 months old today!!!
Nothing to really update. Just wanted to let you know I've added some new pics to the photos link. I had to take some of the old ones out to make
room, but I thought you'd like the new pictures. As you can see from the welcome page photo, he is sitting pretty well by himself now. What a
cutie!!!
Love ya!
Laurie
--------------------------------------------------------------------------------
MONDAY, FEBRUARY 04, 2008 06:22 PM, EST
I got a call today from Levi's nurse in Cincinnati regarding the x-rays he had taken last Thursday. She said there was no sign of Rickets or
osteoporosis. So they didn't have to adjust any of the calcium or Vit. D in his TPN. They did however find a small fracture in his thigh. She said it
was something they would watch, but nothing to be too concerned about because it would heal on it's own. She said that might be the reason he
won't put his weight on his legs. Makes sense.
She also said she had talked to the social worker about getting him evaluated (his motor skills). They are working on it and said it might take a
couple of weeks, but they would be in touch with us.
That's all to update on today. Talk to you all later.
Laurie
------------------------------------------------------------------------------
MONDAY, FEBRUARY 11, 2008 11:44 AM, EST
There's not much to update. Just remember, no news is usually good news. He has been doing ok. We go back to the doc Thursday. Hopefully
he's put on some weight.
Robin had the flu a few days ago. Hopefully none of the rest of us will get it. Believe it or not, we all had our flu shots. This is the second year
Robin has gotten one. The other time was a few years ago. He got the flu then too! All the other years he didn't get it! Suspicious! I just don't want
Levi to get it.
Boy, he is jabbering up a storm while I am sitting here writing. Who knows what he's saying, but he's in a good mood.
Well, that's all for now.
--------------------------------------------------------------------------------
THURSDAY, FEBRUARY 14, 2008 10:22 PM, EST
We had a doctor visit today. It went pretty well. He said Levi was pretty stable. He said his bilirubin (what makes him yellow) was up a bit. He said it
may be from the infection he had a few weeks ago. He said sometimes a urinary infection can cause it to go up. In that case it may go back down
to what it was. OR it may have just went up because of his liver damage, in that case it probably won't go down. He is a bit more yellow than he
has been.
Also he said his sodium was a little on the low side. They are going to keep a close eye on that. If it continues to stay low or drops more, he wants
to keep a closer eye on him. So that would probably mean more frequent visits up there. We go back in 2 weeks, but he gets his blood drawn
weekly. A home health nurse draws them on Mondays.
They said they should be contacting us about his development evaluation. But said it may take some time.
Well, that's all for now. Everyone, take care! Love you all!!
Laurie
--------------------------------------------------------------------------------
SATURDAY, FEBRUARY 16, 2008 10:33 PM, EST
I hope you all like the new page. I needed something a little brighter. I am ready for some warm weather. The other page with the snowflakes kept
reminding me how dreary winter is. Pray for some warm beautiful weather. I need to get outside and enjoy the sunshine and I am sure the boys do
too.
--------------------------------------------------------------------------------
TUESDAY, FEBRUARY 19, 2008 05:52 PM, EST
I got a call today from a nurse on the transplant team. She said they had used yesterday's labs to do their monthly update of his status on the list.
What she told me was good news and bad news. His bilirubin had went up again. It was 11 last eek and it was 13 this week. Also his albumin was
low (protien in his blood). All those numbers affect his PELD score. The score that places him on the list. The higher the PELD score, the higher
he gets on the list. That's the good news, his PELD score had went from 39 last month to 45. That score is about as high as it gets. Which is the
bad news, it means he is getting sicker. Which worries me. I try not to think about it, but when I look at him and see yellow, it just reminds me how
sick he really is. I couldn't bare to lose him.
Sorry to bum you guys out, but I'm trying to stay positive. He is higher on the list, so his chances of getting a call are also higher. Please pray for
him, and pray that i can keep it together.
Laurie
--------------------------------------------------------------------------------
SUNDAY, FEBRUARY 24, 2008 01:34 AM, EST
I just wanted to let you know that I am feeling much better about the whole PELD score thing. I was down in the dumps for a couple of days. I cried
and felt terrible, but I prayed real hard on it and realized that I wasn't doing anyone any good by worrying about things I can't control. I have faith
that God will take care of my precious angel. I shouldn't doubt his love. Also I got some encouraging words from a few friends and Robin was
especially comforting. I told him I would like a day out without worrying about kids (something I haven't had for a long time). So we went out to
lunch and saw a movie today. It was only for a few hours, but it was really nice to get out. I think I was going a little stir crazy.
I also need to tell you that I had to take Levi to the ER on Friday. Don't worry it was nothing serious. You're thinking ER?--How is that not serious?
Well, for Levi it wasn't serious. Here's what happened. I'll have to back up a little bit. Levi's arm had started breaking down from the Op-Site(kind of
like Tegaderm- a clear plastic tape covering. It keeps the site covered and free of germs) we use on his arm to cover the PICC site. It was starting
to have drainage--not from the site itself, but from around the area. Everywhere the Op-Site touched. We had seen this before. When he had the
broviac line (the central line in his chest) He had the same drainage, but we were using Tegaderm at the time. He became sensitive to the
tegaderm and we don't use it anymore. So looks like he's developed a sensitivity to Op-Site now. They say kids that have to use that kind of stuff
have this kind of problem. --So that's not the reason for the ER visit. Me and Robin had been changing the dressing with sterile gauze to give his
arm time to heal. It was looking really bad. When I woke up Friday I noticed his arm with the PICC was really swollen from the elbow down to his
hand. So I took him to the ER. They checked for blood clots with an ultrasound and found nothing. They said he had good blood flow. The ER doc
said to do warm compresses and keep it elevated and if the swelling hadn't gone down to call Cincinnati today. By this morning it was back to
normal. I think we may have just wrapped it too tight. Thank goodness. Hopefully he won't get a line infection from all this. We still have to find
something else to use once we get his arm healed. Any of you with experience, I could use some advice. We've tried Tegaderm, Tegaderm HP
and now Op-Site. He's been sensitive to all three. Do any of you know of anything else we can use that's maybe hypoallergenic?
Ok that's all I guess for today. Take care.
Oh, yeah, he is supposed to be evaluated by First Steps on Wednesday. That is the evaluation for his development. I'll let you know how that
goes. And his Doc visit is Thursday.
Laurie
--------------------------------------------------------------------------------
THURSDAY, FEBRUARY 28, 2008 10:25 PM, EST
There's a lot to update today. We had a doctor visit today and the woman from First Steps came to the house yesterday.
The First Steps visit was not much to tell. She just came out to do preliminary paperwork. A case worker will contact me next week and we will find
out in a couple of weeks if he is eligible. So until I hear something else, that is all I know about that.
The doctor visit went ok, I guess. His bilirubin had went up yet again. It was 15.9 this week. Last week it was 13 something. They are concerned
about the increases because it is going up so quickly over such a short amount of time. We asked what would cause it and he said it could just be
that his liver is becoming more damaged. Or he said it could have to do with blood flow into the liver or he could have a gall stone. So they did an
ultrasound on his belly while we were there to check for that. We should hear about the results of that tomorrow or in a day or 2.
Also, his hemoglobin is low again and he needs another transfusion. It's not the lowest it's ever been, but they wanted to go ahead and do it this
week instead of waiting. It has been dropping steadily as usual. So we have to go to Lexington tomorrow and get him transfused. He won't be
admitted, just through the outpatient. It will take 4 hours so we will be gone for the better part of the day. We are supposed to get there between
10-12. So it will be another long day.
Since his hemoglobin is low and his bilirubin is high, (2 of the things that affect his PELD score), they drew more labs to try and get him a few more
points. The doc said it should put him over 50. AND no one at Cincinnati had a higher score than that. SO as far as this hospital, he is at the top.
That doesn't mean he is #1 on the list because there are more hospitals in this region that would have dibs on organs if they had a child sicker
than Levi, but it should put him pretty darn close. So it is good news. I was more prepared to hear it this week and am in good spirits. I know he's
getting sicker, but hopefully it will mean a quicker transplant.
Ok, transfusion, ultrasound, new PELD score, First Steps, I think that's everything.
Oh, yeah, since he is getting sicker, they want to start seeing him weekly(ughhh). I can just imagine our gas costs... So we go back next Thursday.
Hope you all have a good weekend. I may update again tomorrow if I get any results from the ultrasound or they give me his updated PELD score.
LEVI WILL BE 8 MONTHS OLD SATURDAY!!! He weighed 14 pounds and 10 ounces today!!!
Hugs,
Laurie
7 months old today!!!
Nothing to really update. Just wanted to let you know I've added some new pics to the photos link. I had to take some of the old ones out to make
room, but I thought you'd like the new pictures. As you can see from the welcome page photo, he is sitting pretty well by himself now. What a
cutie!!!
Love ya!
Laurie
--------------------------------------------------------------------------------
MONDAY, FEBRUARY 04, 2008 06:22 PM, EST
I got a call today from Levi's nurse in Cincinnati regarding the x-rays he had taken last Thursday. She said there was no sign of Rickets or
osteoporosis. So they didn't have to adjust any of the calcium or Vit. D in his TPN. They did however find a small fracture in his thigh. She said it
was something they would watch, but nothing to be too concerned about because it would heal on it's own. She said that might be the reason he
won't put his weight on his legs. Makes sense.
She also said she had talked to the social worker about getting him evaluated (his motor skills). They are working on it and said it might take a
couple of weeks, but they would be in touch with us.
That's all to update on today. Talk to you all later.
Laurie
------------------------------------------------------------------------------
MONDAY, FEBRUARY 11, 2008 11:44 AM, EST
There's not much to update. Just remember, no news is usually good news. He has been doing ok. We go back to the doc Thursday. Hopefully
he's put on some weight.
Robin had the flu a few days ago. Hopefully none of the rest of us will get it. Believe it or not, we all had our flu shots. This is the second year
Robin has gotten one. The other time was a few years ago. He got the flu then too! All the other years he didn't get it! Suspicious! I just don't want
Levi to get it.
Boy, he is jabbering up a storm while I am sitting here writing. Who knows what he's saying, but he's in a good mood.
Well, that's all for now.
--------------------------------------------------------------------------------
THURSDAY, FEBRUARY 14, 2008 10:22 PM, EST
We had a doctor visit today. It went pretty well. He said Levi was pretty stable. He said his bilirubin (what makes him yellow) was up a bit. He said it
may be from the infection he had a few weeks ago. He said sometimes a urinary infection can cause it to go up. In that case it may go back down
to what it was. OR it may have just went up because of his liver damage, in that case it probably won't go down. He is a bit more yellow than he
has been.
Also he said his sodium was a little on the low side. They are going to keep a close eye on that. If it continues to stay low or drops more, he wants
to keep a closer eye on him. So that would probably mean more frequent visits up there. We go back in 2 weeks, but he gets his blood drawn
weekly. A home health nurse draws them on Mondays.
They said they should be contacting us about his development evaluation. But said it may take some time.
Well, that's all for now. Everyone, take care! Love you all!!
Laurie
--------------------------------------------------------------------------------
SATURDAY, FEBRUARY 16, 2008 10:33 PM, EST
I hope you all like the new page. I needed something a little brighter. I am ready for some warm weather. The other page with the snowflakes kept
reminding me how dreary winter is. Pray for some warm beautiful weather. I need to get outside and enjoy the sunshine and I am sure the boys do
too.
--------------------------------------------------------------------------------
TUESDAY, FEBRUARY 19, 2008 05:52 PM, EST
I got a call today from a nurse on the transplant team. She said they had used yesterday's labs to do their monthly update of his status on the list.
What she told me was good news and bad news. His bilirubin had went up again. It was 11 last eek and it was 13 this week. Also his albumin was
low (protien in his blood). All those numbers affect his PELD score. The score that places him on the list. The higher the PELD score, the higher
he gets on the list. That's the good news, his PELD score had went from 39 last month to 45. That score is about as high as it gets. Which is the
bad news, it means he is getting sicker. Which worries me. I try not to think about it, but when I look at him and see yellow, it just reminds me how
sick he really is. I couldn't bare to lose him.
Sorry to bum you guys out, but I'm trying to stay positive. He is higher on the list, so his chances of getting a call are also higher. Please pray for
him, and pray that i can keep it together.
Laurie
--------------------------------------------------------------------------------
SUNDAY, FEBRUARY 24, 2008 01:34 AM, EST
I just wanted to let you know that I am feeling much better about the whole PELD score thing. I was down in the dumps for a couple of days. I cried
and felt terrible, but I prayed real hard on it and realized that I wasn't doing anyone any good by worrying about things I can't control. I have faith
that God will take care of my precious angel. I shouldn't doubt his love. Also I got some encouraging words from a few friends and Robin was
especially comforting. I told him I would like a day out without worrying about kids (something I haven't had for a long time). So we went out to
lunch and saw a movie today. It was only for a few hours, but it was really nice to get out. I think I was going a little stir crazy.
I also need to tell you that I had to take Levi to the ER on Friday. Don't worry it was nothing serious. You're thinking ER?--How is that not serious?
Well, for Levi it wasn't serious. Here's what happened. I'll have to back up a little bit. Levi's arm had started breaking down from the Op-Site(kind of
like Tegaderm- a clear plastic tape covering. It keeps the site covered and free of germs) we use on his arm to cover the PICC site. It was starting
to have drainage--not from the site itself, but from around the area. Everywhere the Op-Site touched. We had seen this before. When he had the
broviac line (the central line in his chest) He had the same drainage, but we were using Tegaderm at the time. He became sensitive to the
tegaderm and we don't use it anymore. So looks like he's developed a sensitivity to Op-Site now. They say kids that have to use that kind of stuff
have this kind of problem. --So that's not the reason for the ER visit. Me and Robin had been changing the dressing with sterile gauze to give his
arm time to heal. It was looking really bad. When I woke up Friday I noticed his arm with the PICC was really swollen from the elbow down to his
hand. So I took him to the ER. They checked for blood clots with an ultrasound and found nothing. They said he had good blood flow. The ER doc
said to do warm compresses and keep it elevated and if the swelling hadn't gone down to call Cincinnati today. By this morning it was back to
normal. I think we may have just wrapped it too tight. Thank goodness. Hopefully he won't get a line infection from all this. We still have to find
something else to use once we get his arm healed. Any of you with experience, I could use some advice. We've tried Tegaderm, Tegaderm HP
and now Op-Site. He's been sensitive to all three. Do any of you know of anything else we can use that's maybe hypoallergenic?
Ok that's all I guess for today. Take care.
Oh, yeah, he is supposed to be evaluated by First Steps on Wednesday. That is the evaluation for his development. I'll let you know how that
goes. And his Doc visit is Thursday.
Laurie
--------------------------------------------------------------------------------
THURSDAY, FEBRUARY 28, 2008 10:25 PM, EST
There's a lot to update today. We had a doctor visit today and the woman from First Steps came to the house yesterday.
The First Steps visit was not much to tell. She just came out to do preliminary paperwork. A case worker will contact me next week and we will find
out in a couple of weeks if he is eligible. So until I hear something else, that is all I know about that.
The doctor visit went ok, I guess. His bilirubin had went up yet again. It was 15.9 this week. Last week it was 13 something. They are concerned
about the increases because it is going up so quickly over such a short amount of time. We asked what would cause it and he said it could just be
that his liver is becoming more damaged. Or he said it could have to do with blood flow into the liver or he could have a gall stone. So they did an
ultrasound on his belly while we were there to check for that. We should hear about the results of that tomorrow or in a day or 2.
Also, his hemoglobin is low again and he needs another transfusion. It's not the lowest it's ever been, but they wanted to go ahead and do it this
week instead of waiting. It has been dropping steadily as usual. So we have to go to Lexington tomorrow and get him transfused. He won't be
admitted, just through the outpatient. It will take 4 hours so we will be gone for the better part of the day. We are supposed to get there between
10-12. So it will be another long day.
Since his hemoglobin is low and his bilirubin is high, (2 of the things that affect his PELD score), they drew more labs to try and get him a few more
points. The doc said it should put him over 50. AND no one at Cincinnati had a higher score than that. SO as far as this hospital, he is at the top.
That doesn't mean he is #1 on the list because there are more hospitals in this region that would have dibs on organs if they had a child sicker
than Levi, but it should put him pretty darn close. So it is good news. I was more prepared to hear it this week and am in good spirits. I know he's
getting sicker, but hopefully it will mean a quicker transplant.
Ok, transfusion, ultrasound, new PELD score, First Steps, I think that's everything.
Oh, yeah, since he is getting sicker, they want to start seeing him weekly(ughhh). I can just imagine our gas costs... So we go back next Thursday.
Hope you all have a good weekend. I may update again tomorrow if I get any results from the ultrasound or they give me his updated PELD score.
LEVI WILL BE 8 MONTHS OLD SATURDAY!!! He weighed 14 pounds and 10 ounces today!!!
Hugs,
Laurie
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