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Updates on Havalah

By: Steve
Date/Time: 10/19/2006 11:39:13 PM
Update:

Havalah was admitted to children's hospital this afternoon because of a high fever. She's been fighting a cold on and off for 2 months now, but her nasal discharge has been rather colored the last week. We brought her to a doctor for a hearing test and ended up being sent home with some anti-biotics on monday. She started getting more sick on Tuesday and was running a 101.9 fever on wednesday night. Children's told us to hold off unless it got higher, and I was going to initially bring her in for labs today (thursday).

this afternoon Havalah started to run a higher fever, into the 103 range so kristen brought her into the ER around 2pm today. She's being treated with fluids and iv antibiotics. Her fever was down to 102.7ish when I left the hospital around 9pm. The labs results were run in the later afternoon and they were fine - her AST/ALT and bilirubin are totally normal.

Havalah generally has been feeling sick, sleepier, and crabbier than normal, but there are certainly periods of time where she seems to feel normal too. She was very unhappy to be at the ER, but actually perked up quite a bit once she was on the 4th floor - we know most of the nurses on that floor from being in there so much last year.

At this point we might get released on Friday or Saturday. Kristen is spending the night there. If you wish to stop by, the room number is #425 and the phone number to that room is 414-607-5025. You can also try her cell # since we seem to get reception in that room.

 
By: Kristen
Date/Time: 10/24/2006 11:42:11 PM
Update:

I woke up to bad news this morning. Steve brought Havalah in for follow up labs last night, and I got an early phone call with the bad news; elevated LFT's for those of you blissfully unfamilar with the term Lft's it stands for liver function tests, and if they are elevated it means your liver is unhappy. So the call this morning was to tell us we needed to come in for a biopsy.

We spent a long long day waiting for various things today ... her initial PT and PTT (blood clotting times) came back super high, so they decided to repeat them to see if it was a lab error ... and so it was more waiting for the lab person to come around and then for results, and everything today seemed to be taking at least three times what I was expecting. So again they were high so they had to call of the biopsy because it's too dangerous to do it if her blood isn't clotting. At least at that point in the day Havalah could have something to eat. 3 is not an easy age for being NPO. all day she kept asking me for something to eat and drink. So we waited several more hours before we finally saw the GI fellow around 6 to find out what was going on.

So here's the plan : they admitted us tonight, they're giving her plasma (thank you blood/plasma donors) to improove her clotting times, and then we'll do the biopsy tommorrow morning. We'll have to stay overnight tommorrow so they can monitor her, and then whether we stay or go home etc. will depend on the biopsy results. Oh and she's still running fevers .... this morning when she woke up it was 102.5 under her arm.

So now I'm a little worried. High fevers for several days now ... elevated labs AND a high PT ... who knows what's going on. I am also sad that tommorrow night was supposed to be my last day at work, and after working there for 10 years I really want to have a last day to say goodbye etc. PLUS friday is my birthday and we have halloween plans all weekend. We were in the hospital last year for my birthday and halloween and I was really excited about getting to do everything like a normal family this year.

All of this ... out of nowhere .. is a big kick in the butt reminder that we are not a normal family.

 
By: Kristen
Date/Time: 10/25/2006 10:12:05 AM
Update:
oh ... this doesn't look like it's going to be any better of a day than yesterday. Havalah ran high fevers overnight again. I had to talk them out of waking her up at 1 in the mornning to poke her for blood cultures. Since she has ran a fever every night since weds ... I figured it could wait til morning. Her fevers are running over 103 though, so they're significant. SO she had labs early and it's more bad news. her ALT is 180 and her AST is 480. Those are pretty high numbers. Also despite the plasma they gave her last night her PTT is still about 60 which is unchanged from yesterday. They can't do a biopsy to figure out what is wrong with her until it's lower so they're goinng to try even more plasma today. So hopefully that will work, if not they have to do more blood work to try and figure things out and it would take a couple of days to get back. In the meantime she'll be NPO until they know for sure whether she'll have her biopsy today or not. So now I am feeling pretty stressed out. We've never had a PTT that high before .. and it makes me really wonder what is going on.
 
By: Kristen
Date/Time: 10/25/2006 3:51:09 PM
Update:
Well she's having a biopsy done right now. They have her a lot of plasma today and it really didn't change anything, but when they talked to the radiologist he said they really go more by the PT than the PTT so they went ahead with it. It didn't get started til around 2:30 and then she'll need to lie flat for about 6 hours after that so I won't get a chance to do anymore updates for awhile. We should get results back tommorrow.
 
By: Kristen
Date/Time: 10/25/2006 8:28:12 PM
Update:
avalah has been resting comfortably since her biopsy. She has to lay flat and as still as possible for 6 hours, which is a challenge, but it hasn't been too bad. She's spet a lot of the time sleeping which is great. She did wake up long enough to eat some mac and cheese and a cupcake. she insisted on feeding herself with no help despite the fact that she had to do it wile lieing down and one handed since the other hand has a IV and bandages around it. So tommorrow we should get some answers, hopefully we won't get bad news. Cobsidering how bad her labs were this morning I am not thinking home is a possibility yet even if her biopsy doesn't show anything bad.
 
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  Main Fundraising EVENTS / Info / Updates Pictures Havalah Updates Biliary Atresia / Liver Transplant Info Become an Organ Donor Links Guest book  
"DONATE LIFE" GREEN REMINDER WRISTBANDS FOR SALE - $2 EACH CLICK HERE