Updates on Havalah

By: Kristen Date/Time: 2/10/2005 3:29:11 PM Update: Oh We have had a rough week! Almost a week and a half ago Steve started getting sick, with some sort of bronchial virus/infection that had him feeling tired and miserable. It was at a particularly bad time since our friends from Minneapolis Joanne, Isaac and their little boy Rowan (6 weeks older than Havalah) were coming for the weekend. Because of thier visit i had all of my work shifts earlier in the week than usual and I was trying to get our house in order and clean before they arrived. They were getting in late on friday night, but to add to everything my intro to judaism class was having the special group Shabbat dinner on Friday night which I had really been looking forward to. So we made it to Friday and everyone arrived safely, Steve continued to be feeling miserable with lethargy and a bad headache. Saturday morning when we got up I noticed Havalah was acting sleepier than usual and felt warm. I took her temperature and it was 101.6, I waited a little bit and took it again and it was still high. By this time Joanne's parents and sister had arrived from green Bay so that they could see have lunch with us and see Rowan. A year and a half ago when we left the hosptial post kasai they had told me to call Children's hospital and have the GI doctor on call paged anytime Havalah's temperature rose above 101. This was the first time that had happened! So I called, and was happy that the Doctor on call was Dr. Skelton who I remmebered as being very kind and friendly to us back when Havalah had the kasai done, but unhappy to hear that he felt we needed to have her come in to the ER to be seen by a doctor. Our first ER trip! In general it was better than I expected, Dr. Skelton had called ahead and filled them in on Havalah's condition so they knew in advance she had biliary atresia, and they took everything very seriously. They checked her out right away, but determined that she was fine to wait in the lobby until they had a room open. Even then they got us in very quickly... and instead of seeing an ER doctor, Dr. Skelton came in personally to examine her. My only critisism of the whole event would be that we were mianly there to have labs drawn, and they didn't actually draw blood from her until we had been there over 2 hours. They also did a urine test, and we had to wait there until the results came back so they could decide if it was probable cholangitus which would mean admitting her. The lab results showed an increase of 2 points in ehr bilirubin , from just under 8 to 10, and a jump of 50-75 points in both her AST and ALT which is a decent sized increase, but not unheard of for Havalah. When they came back with the results Dr. Skelton came back with another GI doctor that I am unfamiliar with, who examined Havalah as well. By this time she was laying in her stroller watching tv and was very sleepy. Despite the fact that she always gets upset anytime a doctor comes near, she barely stirred while he examined her. He took this as a bad sign and wanted to admit her. Dr. Skelton vouched for her being much fussier for him earlier, and I weighed in with promises that we would bring her back if her temperature got higher or there were any other signs of her getting worse, and he reluctantly agreed to let us go home. I was relieved not only because we had houseguests, but mostly because I felt confident that she didn't have cholcangitus but instead had the same infection that Steve had, and that she could sleep better and recover better at home that in the hospital. They sent us home on Cipro which is a very strong antibiotic, just in case it was cholangitus or another sort of bacterial infection. Sunday Havalah continued to be tired, but her temperature came down to normal. She has since then started showing signs of a regular cold with a runny nose and a bad cough, but the fveres have stopped. We had labs drawn again today (thursday) and her ALT and AST have both came down a bit, and her bilirubin is back down to where it was before the fevers started (just under 8) To make things even more difficult Sunday night in the middle of the night I woke up extremely nauseous, and to keep things as palatable as possible, let's just say I had it coming out of both ends. All day Monday i was unable to keep anything down , even water. We were concerned that I was going to become so dehydrated that I would have to go into the ER too to get some IV fluids. I kept about 3 ounces of water down late monday night though, and I decided that was enough to buy myself some time. All day Tuesday i continued to have horrible headaches/bodyaches/ nausea and diarhea. I tried to sleep when i could, and forced myself to keep trying small amounts of liquid... which made me feel more nauseous, but I was able to keep down. Wednesday morning I continued to be miserable... and frusterated that things were still not looking better. By wednesday afternoon I started feeling a bit better and made myself some Ramen noodles and actually felt better after eating that! Trhoughtout the day I continued to feel less nauseous and the diarrhea finally started waning. By nighttime I was drinking as much water as I could, and even the headaches were startng to go away. I actually ate a small meal at dinner time and my stomach tolerated it just fine. Today thursday I still feel a bit weak, and I am still tyring to take everything slowly, but I managed to bring Havalah in to get labs done, and in general I am feeling grateful to be feeling so much better. So that's the scoop with us and what we've been doing the last loooog week. I missed class, I missed work and our house is back to be being a mess. yesterday I looked at my email for the first time in days and I had over 1000! 99.9% junk mail of course. We're starting a new fundraiser that involves selling reminderbands similar to the Lance Armstrong ones. Tehy are bright green and they say "DONATE LIFE" to promote organ donation. They cost us just over 1.50 a piece to purchase. We'll be selling them for $3.00 with the proceeds going towards Havalah's transplant fund. If you would like to purchase one, or you would like to help sell them, Please contact me at kristennn@brokebox.com or call at 414.961.6190 thanks! Kristen

[Add Update]