Updates on Havalah

By: Kristen Date/Time: 10/20/2005 4:02:50 PM Update: Well, we had labs on Tuesday and her liver numvers were a little bit elevated, so we retested them today and they are aboutt he same. Her ALT is 94 and AST is 76, her GGt was in the 300's on tuesday i don't know if they even tested it today. her bili is normal and her white blood cell count is not elevated at all. Tommorrow morning we need to be at children's bright and early and then she will be having a liver biopsy at 9:30. Fromt here they will keep us overnight for observation and we will get biopsy results back saturday AM. If it doesn't show anything to be concerned about we should be able to come home on saturday. If it shows rejection or cholangitus, or they discover another reason for the elevation, they will decide on treatment from there. Otherwise Havalah is doing fine. She has seemed a little cranky the last few days off and on, but otherwise is not acting or looking sick. I'm not feeling very good about staying at the hospital again .... I just hate it there! So please pray for Havalah that there is nothing wrong and that our stay at children's is a short one. we will be on the 4th floor again, I will try and post our phone number tommorrow if anyone wants to call, but in case i am not able to get away ... you can just call and ask them to direct you to our room. Last time Havalah had a biopsy she was extremely cranky afterwards, I'm hoping ti goes a little better this time!   By: Kristen Date/Time: 10/21/2005 6:35:05 PM Update: hello! It's al,ost 6:30 amd we just got moved to a regular room from day surgery. 4th floor was very busy today and every time they would get a room cleared for us, someone different would need it more urgently. So Steve is with Havalah and I am taking a little break to use the computer. Her biopsy today went fine with no complications that we have seen yet. We won't get the results back until tommorrow early afternoon, and from there we will find out what happens next. Havalah did ok this afternoon, she did react badly to the nebutol (type of anesthesia) again. She slet for awhile while I held her, then woke up for about an hour and was restless and angry, and then slept again for an hour, and after that she was mostly fine. Since then she's been watching videos and playing with toys and in a pretty decent mood for being at the hospital. We're in room 430 i forgot to get the phone number but you can call and asked to be transferred to the 4th floor room 430. My mom and dick and haley are coming to visit tommorrow, I know Havalah will be excited abotu that. Almost every day she asked to look at pictures of Haley on the computer... she hasn't seen her since before her transplant. And Joanne if you are reading this we'd still love to see you, whether we're still at the hospital or at home, or half and half :) Thanks for checking in! Kristen   By: Kristen Date/Time: 10/22/2005 3:19:26 PM Update: Well we got priliminary biopsy results back, they are not 100% conclusive but they do show that *something* is up. Some cells they found look like rejection, a smaller amount of celles they found look like possible cholcangitus. The GI doctor on call consulted with one of the surgeons from transplant and they think that based on the biopsy and lab results it is most likely mild rejection. The plan as of right now is to give her IV steroids for 2-3 days depending on how she reacts to them, and depending on what our primary Gi doctor has to say about it. She is also being given IV antibiotics both as preventative because of the liver biopsy and in case there is some cholangitus. In general aside from her diarria which has been a regular problem for us, Havalah has not seemed sick at all, and we have spent almost as much time in the playroom as we have in her room. The only time she needs to be hooked up to anything is when she gets the IV drugs (antibiotics and steroids) and at night they hook her up to the monitors. She does not have any IV's because we still have the broviac port so they are able to use that. We were woken up pretty early this morning by doctors but aside from that we both slept pretty well. Right now Steve and I are both at home while my parents and Haley are at the hospital with Havalah, and Joanne is coming to visit tonight. I am still going to go to work tommorrow from the hospital because it's only a 4-5 hour shift, and I figure if this is going to be happening to us regularly we need to try and go on with life as normally as is possible. If Havalah was miserable and feeling awful I wouldn't leave, but since she is doing well I think it's fine, and Steve will be with her when I'm at work. Her lft's today were both around 150 which at first freaked me out, until I remembered (and a med student pointed out) that it is normal for them to be higher after the mild trauma of a liver biopsy. her GGT was higher too ... in the 400's. Her bili is still normal. I'll be updating again by tommorrow at the latest!   By: Kristen Date/Time: 10/23/2005 10:51:37 PM Update: Hello! Havalah's lft's had allready come down a bit this morning after one dose of steroids so I am feeling confident any rejection she is having can be turned around. I went to work today but Havalah had a good day playing with Steve, and his parents who came to visit. She took a big poop right on grandpa's lap, and he had to change into scrubs! Fortunately they have laundry facilities now and they were able to wash his pants for him. We spent most of the evening in the playroom and in general she has been in a very good mood. Tomorrow's labs will bring more info, and we will see doctors from GI and transplant tommorrow morning as well. We are hoping we will be able to go home!   By: Kristen Date/Time: 10/25/2005 1:42:58 AM Update: Sorry to be updating so late, it's been a busy day. We are home! We were discharged in the late afternoon after Havalah got one last dose of her IV antibiotics and prednisone. Havalah's labs this morning looked much better. Her AST was back in nomral ranges and her ALT was down to 66 which is still high but moving int he right direction. We repeat labs on wednesday and I am hoping all of her lft's will be back within nomral range. We will be on oral antibiotics at home for 5 days just because there was a few minor signs of possible cholangitus on her biopsy and she is particulalry succeptible to it, and we will be back on the prednisone for awhile. It's too bad prednisone is so bad for you because it is great for Havalah's appetite, I noticed her eating more today allready. In general this hospital stay wasn't as bad as I was expecting but I still would like to avoid future visits!   Next >>

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