| By: |
| Date/Time: 11/1/2006 10:06:12 PM |
Update:
Oh My kid is full of viruses! The infectious diseases doctor was by today and said that in addition to having enterovirus, and very strong case of adenovirus, she also showed antibodies to cmv and ebv. She may not have either of those right now though, last week her EBV load was 0 and she has zero swollen lymph nodes so, it may be that she was just exposed to it in the past ... and similar with CMV she may have had cmv in the lst year, or been exposed to it etc. I am not sure I enterily understand but they are giving her gancyclovir allready anyhow which fights CMV and when/ if we ever get to go home again she'll go home on it's oral counterpart valgancyclovir. Oh and she tested positive for soemthing called lupas anticoagulant blah blah blah ... which has nothing whatsoever to do with the diease called lupus. Apprenatly it's something that plenty of people have without knowing it and it could b related to the virus she has. BUT it means her PT and PTT scores are falsly elevated, and it means plasma will not affect those score. Which is why today when they told me she was getting plasma before her biopsy tommorrow I was feeling a bit exasperated. After much confusion it was straightened out though. I would say the fact she has that is a good thing ... since it explains the high PT and PTT scores.
SO tommorrow she is having another liver biopsy, this time they will get more tissue and they will get it from two seperate spots.
Also tommorrow she is going to start this new not often used medication for the adenovirus. The administration of it is quite a production, it involves getting a pre-medication beforehand then 3 times her daily intake of water beforehand .. then the medication over an hour ... and then more water afterwards and another meidcation later after that. it can be hard on the kidneys but apparently with all the water etc. the risks are minimal. We'll have to get the medication once a week for awhile and then once every other week for awhile after that so it will be an ongoing thing. if that's the only issue though, we can do that outpatient and then come in once a week for the infusions. So hopefully the biopsy tommorrow will give us more info. Right now ther eis no talk yet of us going home .. i think they just really need to know that it's just these viruses and not also rejection, or EBV etc. Plus they may want to wait til her fevers subside. she was starting to run one again today around 4 but hadn't run one since around that time the day before. I still suspect as we get rid of the prednisone we may start to see more fevers, but hopefully this medication for the adenovirus will help that too.
My main fruseration right now is being in isolation. i understand the need for it, but it's still ... a lot of time spent in a tiny little room, trying to keep a three year old busy. She has been making necklaces with some small wooden beads , and they had a ceramics person come by the hospiotal last week one day so she's been painting this ceramic pumpkin over and over again. today we put lots of glitter and sequins and glue on it. It's become quite the multi-media project. We also color, play a blue's clues memory card game, and watch a lot of tv and videos. All of those things get a little boring though |
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| By: Kristen |
| Date/Time: 11/2/2006 1:25:12 PM |
Update:
I have to say I am going a little insane today and want to have a full fledged kicking and screaming on the floor fit.
Here's how today was supposed to go
8:30 biopsy
9:30-10:00 - get back to room take pre-medication and lay flat for 4 hours because of potential for post biopsy bleeding, so hopefully sleep
3 hours later : get huge amounts of water through IV and then start crazy medication usually only given to aids patients ad bone marrow transplant patients that will help fight adenovirus
one hour after that : more huge amounts of water through IV
ongoing after that : labs and close monitoring because this crazy drug can kill your kidneys it's called cidofovir if anyoe is interested
INSTEAD : her H&H went a little lower this morning .. although it's been very low all week because they have been taking tons of blood from her, so they decide pre-biopsy she needs some red blood cell's so ... they have to draw blood to do a type and cross .. regardless of the fact that we all know her blood type .. it's standard procedure. we wait over an hour to get it back .... then wait for the rbc's ... then wait and wait. It's 12 now and radiology just called to say it will be at least 2 hours yet.
So not only am I left sitting here with a kid begging please please please mommy I'm hungry,when she can't have anything til after the biopsy, but she still needs to get this crazy med AFTER the biopsy so it will be a ongoing process late into the evening after all of the doctors have gone home and we just have residents etc. around if something goes wrong. |
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| By: Kristen |
| Date/Time: 11/4/2006 9:30:15 PM |
Update:
So I think things are going pretty good. She had another biopsy on wednesday and she started this crazy medication for her adenovirus that they give to aids patients for cmv .. and to bone marrow transplant recipients for adenovirus. It's a little scary but the infectious disease doctor insured me that now that they know more about how to give it, it's less likely to have serious side effects (like destroying your kidneys)
So we don't have the offical biopsy results back yet, but mostly it seems to be similar to last week's. They tested it for all sorts of virus's and they're just finding the adenovirus, so at least she doesn't have MORE to deal with. The GI doctor this morning said he thought there still might be some rejection showing on the biopsy and that we would talk further about whether we would do more prednisone tommorrow after her labs, i also talked to the transplant surgeon and he felt more that it was just the virus. No one knows for sure, and treatment will depend on what her labs do.
Havalah seems to be feeling better though. She hasn't ran a real fever in a few days and her mood is much improoved. She is not cranky and irritable like she had been.
I'm kind of hoping that they will let us go home this coming week, since the adenovirus treatment can be done on an outpatient basis. |
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| By: Kristen |
| Date/Time: 11/9/2006 1:52:44 PM |
Update:
Well we went home, earlier in the week! I went to post about it and then got side tracked and forgot. SO today we're back just for the day for her cidofovir. the whole process takes over 10 hours so they have us up on the 4th floor for a short stay. if everything goes fine we'll just go home tonight when it is done.
This morning was a little rougher than it needed to be though, they're full on the 4th floor and her medcine had to start 3 hours after she had gotten her pre-medicine so they started us out in the treatment room which is almost like a large supply closet. It wasn't so bad though, and now we have a new appreciation for the regular rooms.
in good news .. Havalah's adennovius load has went down by a LOT. So hopefully we will go to once every other week allready. And in bigger good news ... we ran into one of our local liver families and their little boy got the call for transplant today. They just got the news that it is a go, and he is going down to surgery right now. SO please stop and say a prayer for their little boy, he is 2 and a half, and he has had a lot of recent complications, so they were very anxious to get this call. |
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| By: Kristen |
| Date/Time: 11/16/2006 2:04:13 AM |
Update:
Havalah continues to be doing pretty well. She's starting to be having mild cold symptoms again - which is frusterating since she has barely left the house, but they are mild, a little bit of sneezing and a little clear nasal discharge. We got her labs back today and her liver numbers look great .. her lft's are well within normal ranges. We still haven't gotten the adenovirus load back yet - which is frusterating because theoretically if it was high she would be going in for her treatment tommorrow- so we don't know yet if she'll have to go in for it on Friday - or next week, or even later in the day tommorrow!
Mostly things have been fairly unevcentful. We did have to go into the ER last saturday because her PICC lines wouldn't flush. They put TPA in it which helps break up clot and it was fine .. but we were there for 2 hours before they started the process, when it's not an actual emergency - things take forever at the ER. Not that we have had a lot of experience - that was only Havalah's third ER visit ... which isn't bad for a transplant kid.
Monday night we had a home healthcare nurse come out to the house to draw labs and change her PICC line dressing ... it's nice to not have to go in for labs! I was a little worried that we would get someone inexperienced who hadn't done many line dressing changes, but the nurse that came out was great. After watching her work I have a lot of trust in her capabilities AND she was really nice. The only mishap was that they sent her blood to froetert and then sent the results to Dr. Adams the surgeon that follows her ... instead of sending them to CHW and to DSr. Tolega/Stacee, so they took longer to get back and Stacee had to call me on tues to see if they had even drawn blood since they hadn't gotten info. In the grand scheme of things - not a big deal.
The little boy i mentioned last week that got his transplant last Thursday is doing very well. He is still in the PICU but hopefully they will be moving to the 4th floor soon. Despite that it's been a sad couple of weeks over at liverfamilies.org WE had two little baby boys both under a year waiting for livers ... and having all sorts of different issues and challenges. We all prayed for them and followed their progress closely so it was quite a blow to our community and to each of us individually when both of them passed away. Please pray for their familes, who are having such a rough time right now.
Despite all of the issues Havalah has been having lately - We're feeling pretty lucky right now. |
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