Updates on Havalah

By: Kristen Date/Time: 9/2/2005 9:16:50 PM Update: Well we're at the hospital again, but it *should* just be an overnight stay. We had labs done this morning and most of her liver numbers were good, but her bili was up a pinch. Total bili was 0.9 which is within normal ranges but conjugated bili was .7 which is high. Havalah's conjugated bili has been 0.0 for the last 2-3 weeks so it is a significant increase. Havalah's white blood cell coutn had been coming down, in fact wednesday it was 10 point something which is the first time it was within normal ranges in 2-3 weeks, BUT it was up just a smidgen today to 12.5 which doesn't sound bad to me since up to 12 is normal but any increase at all combined with her bili going up is enough that they suspect she is not 100% done with the cholangitus that her biopsy from 2 weeks ago showed. so we are in the hospital for an overnight stay to start on Iv antibiotics and learn how to give them at home. when Stacee first called me today to tell me about labs and that e had to go inpatient I was upset and I was convinced her WBC and bili counts were because of the slight cold she has had since yesterday morning. That was when i just knew that her total bili was .9 though, i didn't know her conjugated bili had went up so significantly, and I didn't know if her bili could be affected by a cold. So i did get a little teary eyed for awhile because I so badly did NOT want to go back to the hospital, but we had a few hours to get stuff together etc. and by the time we actually were ready to go to the hospital I was/am fine with it. As long as we get to go home tommorrow!   By: Kristen Date/Time: 9/3/2005 11:46:39 PM Update: we are at home! We got home about 2,but it was a hectic afternoon and I am tired out after barely getting any sleep at the hospital last night (Havalah woke up at 4 and stayed up, but mostly just played in her crib and wasn't cranky about being up in the middle of the night) So that's why i am so late in updating. The overnight stay wasn't too bad. Both of the nurses we had were really nice and accomodating, and we brought all of our own meds in which somehow seems to simplify things. It's still the same old hospital drill though with everything taking forever. We were there to get IV antibiotics started and to learn to use them. well they didn't even get to the floor until after i had allready went to bed, and the homecare equiptment is different than the hospital equiptment, They have a home healthcare nurse deliver the supplies and teach you to use them anyhow, so there's no reason for the hospital staff to go over it. We did also have an ultrasound done in the morning and we had her lovenox level checked. We had planned to get that done on tuesday anyhow buit since we were there and all ... did it then. What I don't get is why we couldn't do the ultrasound friday outpatient and then just have the home health care company come out and get us set up at home on friday, but that's the way they do things. So we got out today around 2, and then the nurse came to our house around 5 and got us set up. It seemed a little overwhelming at first, but now that I'm actually doing it I feel confident about it. I do have to get up in the middle of the night and do it though, which may be a bit more difficult esp if Havalah wakes up and stays up. She has to get the IV antibiotics 4 times a day, and the whole deal start to finish takes just under an hour each time. Adding that on top of her shots, and meds and I feel like Havalah's private nurse. It feels like a lot of work, but when compared to otherwise being at the hospital, it seems much easier and simpler. I'm not sure yet how long she'll be on the IV antibiotics but for 3 days minimum. Right now we only have enough supplies for a a 3 day course counting what she got at the hospital, so we'll have to wait til we can talk to Dr. Tolega or Stacee and find out for sure it could depend on her labs too, and since monday is labor day we won't be having them done until tuesday. Otherwise Havalah is doing really well.... she certainly isn't acting sick at all.   By: Kristen Date/Time: 9/6/2005 5:48:15 PM Update: Havalah's IV antibiotics seem to be working. Her bili is back down today to total 0.2 and conjugated is 0.0, and her white blood cell count is 6.6 which I think is the lowests it has been since transplant and is totally normal. We had a doctors appointment this morning as well, and In general everything is going well. Steve and I have both been feeling a little overwhelmed with the amount of homecare Havalah requires right now. On top of all of her meds, her Ng tube maintence and feedings, broviac maintenance, incision care , and frequent trips to the hospital for labs and appointm,ents, we now have to administer IV antibioitcs every 6 hours. So at 9 in the morning, 3 in the afternoon, 9 at night and three in the morning. The antibiotics are kind of a pain. You have to take them out of the fridge and hour or so early to let them reach room temperature, then you flush the broviac with saline, then connect her to the pump for antibiotics which lasts about 35 minutes then another saline flush, then a vanco-heperin flush. The hard part is everything has to be kept immaculately sterile so you can't set anything down once it is open or uncapped and you use a alcohol wipe on just about every end. Because everything is going right into a central vein if bacteria did get in , it could create serious problems, and fairly quickly. While i am complainign about how much work this is ... at the same time i am very grateful we are able to do this stuff at home instead of having to be inpatient, and i do realize that all of this is to be expected so soon after transplant, and things could be much much worse. I am so happy Havalah is doing really well so far, and having to be her full time home nurse is absolutely worth it, it's just actually doing it is a bit tedious. In other bad news the online forum i count on for comfort and support has temporarily shut down their forum today because of some complaints they have received. They sent oyut an email and have a post on the forum site saying it is down until further notice etc etc. The email made me feel like we were all being scolded, and i'm feeling a little hurt and offended by it. I also feel like I've lost some trust for the forum admin. What if they had decided to take down the forum while Havalah was going through transplant? What if someone sle gets the call while it is down? what about the other families that are going through transplant right now and count on all of us for support? While I often disagree with things people post and are sometime bothered by them, I am able to ignore the parts that bug me and move on. it never would have occured to me wot write to the admins and complain because i disagreed, and by shutting downthe whole forum I feel like they are turning this into a big deal when it really isn't. I hope they get it back up soon, and I know there will be new rules about what can and cannot be discussed which will probably be a little insulting, and I hope that within time I will get over it because it's an important part of my life, but right now I can't imagine feeling the same about it.   By: Kristen Date/Time: 9/18/2005 2:52:11 PM Update: I know, it's been a long time! We were so busy doing those darn IV antibiotics every 6 hours, and i was so exhausted from getting up every night in the middle of the night to do them... Plus all week I have been listing Havalah's winter clothes from last year on ebay, and that's a lot of work too. Anyhow we are done with the antibiotics (yay!) You wouldn't believe what a relief it is to be DONE. It was relaly time consuming in that the vial had to be taken out of the refridgerator an hour in advance, then you had to get all of your suppolies ready ... saline flushes, alcohol wipes etc. Getting it set up took about 5 minutes and you had to be very careful how you do everything to keep it sterile because it's going into the vein leading right to her heart. Then it ran for about 35 minutes, more supplies ...a saline flush and then heparin flush and then putting everything away. Steve was in charge often of making sure the vial was out of the fridge but I did all of the antibiotics by myself so if i ran errands etc. i always needed to make sure I was home before 9, or if I wanted to head out earlier, i couldn't leave til after 3:45 or so, I feel like a bit of a whiner because there are some people that have done this for much much longer than us, but it really was a hassle. So now the new thing is ... Havalah's NG tube. Well we have been slowly decreasing the amount of formula she gets because she continues to have good weight gain (she is up to 27 pounds, and just over 33 inches) so we went down to 2 8 0z cans last tuesday, then on wednesday she pulled her tube out.We just decided to give her her morning meds orally and leave it out for awhile... and then at night we though hmm let's try leavig it out ans see how she eats the next day. She DID eat more, but she still wouldn't drink formula from a cup and since she also won't drink milk, AND her diet isn't varied enough for her to get all of her nutrients she has to have formula. SO what we decided to do is give it to her through a syringe squirting it into her mouth a little bit at a time the same way she gets her medicine. it takes about 15-20 minutes every time we give her 4 ounces (4 times a day) and she does gag a little bit, but she is getting better about it. We are hoping that eventually she will realize she has no choice and start drinking it on her own. And then good news is she is definetly eating better! And we love not having the NG tube in, so at this point we have no plans to put it back in. So aside from forcing the formula on her the only medical care she requires is her medicines, and that is not that big of a deal. Every day she seems more and more like a regular kid. She's also been talking more, and has had much less diarria! Her lab numbers have been mostly good, they were a little high on tuesday, requiring us to get them rechecked on wednesday but then they were better, and they were good on friday too. So right now we're feeling good about things! I'm also going back to work this week, and on tuesday Steve and I are going to see a Beck concert in chicago with some friends. As soon as I get caught up on my ebay stuff I intend to get busy getting Havalah's photos posted on her website .. I think we're about 6 months behind! I did see the stuff on her guest book about someoen using her photos... and I don't know anything about it. The site they were supposedly on is no longer there. We could set the website up so that people couldn't right click on images and take them, but we want family and friends to be able to if they want! I guess it's something we'll have to think about. That's about it for us, we've just been doing a lot of hanging out at home and watching a lot of "go Diego Go" which is Havalah's new favorite show. Thank you to everyone for their well wishes and continued prayers. please sign our guestbook and tell us how YOU are doing!

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