Updates on Havalah

By: Steve Date/Time: 12/1/2005 12:35:46 PM Update: We're inpatient at the hospital again. We woke up this morning and Havalah had a bad fever (102.7) so I went along with them to children's hospital this morning for a while. Her lab numbers today were lower than on Tuesday, but Havalah felt pretty awful. She is in room 430 so if you want to call the room direct, the number is 414-607-5030   By: Kristen Date/Time: 12/2/2005 8:40:20 PM Update: We had a pretty uneventful day at the hospital. Havalah ran fevers all night but her temp returned to normal in the morning. She's getting 2 types of powerful IV antibiotics right now, so I guess they're working. They suspect the favers etc. are cholangitus but really they don't know. None of the cultures has came back positive yet. Havalah's labs this mronign were better. Her AST is nomral now, her ALT is 139 which is great since it was in the 200's yesterday, and even that was down from tuesday. Her total bili this morning was .7 from .9 from 1.5 and conjugated has been 0.0 all along. So who knows what's going to happen at this point. They'll continue to monitor her labs all weekend and depending on how things are going we'll come up with a plan with GI on monday. if things continue the way they are currently and we don't find a reason for her fevers etc. I am guessing they will let us go home early in the week on IV antibiotics. If she continues to get what they think is re-occurent cholangitus though they're going to want to go in and do that surgical revision to make her connection longer. I don't know if anyone is still thinking bile stricture or not. Early next week we'll get another ultrasound and hopefully that will give us more information. In general though, Havalah is feeling pretty good right now, but none of us are happy to be back at the hospital.   By: Kristen Date/Time: 12/5/2005 12:32:20 PM Update: We're home! We were discharged yesterday afternoon. They had planned to keep us at least through the weekend, but every day Havalah's labs were improoving, she wasn't running fevers anymore ... I think they just didn't think there was any reason for her to be at the hospital and we agreed. We're not even on IV antibiotics ... because they felt they didn't have anough proof to assume it was cholangitus, and we've had so many courses of IV antibiotics recently that they realize they can't keep assuming. So for now she is off, and then if her numbers go up again I think that will give them reason to believe it is cholangitus. Soat this point we don't really now what to think, it's definately not clear to anyone what is going on with her, but I would rather it be unclear with decent labs and a kid that feels pretty good, than have it clearly be bad. So tommorrow we go in for labs and to see Dr. Tolega and Stacee (our coordinator/NP) and what we talk about with them and what course of action we take will depend on Havalah's labs. Right now we're just happy to be back at home, even if it is short lived.   By: Kristen Date/Time: 12/6/2005 4:17:50 PM Update: I'm on my way to work so i am going to keep this brief.... Havalah's labs are up again today. The plan as of now is to repeat labs and an ultrasound thursday morning. if they are higher or still up we will be admitted, and if her bile ducts are dialiated enough that they think it is possible they will do an exterior cholcangiogram thursday as well. That is similar to a biopsy but instead of inseritng a needle into the liver they're trying to insert the needle into the bile ducts .. which are tiny so it is very hard to do , and likely they will not be able to. If it is unsuccessful, Or it shows bile duct problems they are going to schedule surgery to do an interior cholangiogram next week, and if they need to they will do the surgical revision then. They would like to avoid opening her up because it will be a magor procedure and will be long, messy and difficult due to all of her scar tissue etc. They've said it will take longer than transplant did. Anyhow that's the scoop i will try to write more later. thanks, Kristen   By: Kristen Date/Time: 12/7/2005 12:32:30 PM Update: Just when I was resigned to the idea of being admitted tommorrow .... Havalah started running a fever so we're heading back in today. I think at this point we can fairly safely assume it is cholangitus. We'll be heading to the hospital in about an hour, they'll have a room ready for us by then and they'll start IV antibiotics again. Tommorrow we will still have the ultrasound and if her ducts are dialated enough they will try for the cholangiogram. Havalah is doing ok ... I did give her some tylenol but her fever is still running just over 101, so she's warm and she's tired. Rihgt now she is hanging out on the couch watching Diego. I can tell she's feeling sick but she was feeling well enough to try and sing along with the theme song. That's her new thing lately ... trying to sing along all of the time, despite not knowing 90% of the words to any given song. Her speech is improoving a lot though, and she will try saying most things. So I am frusterated I had a big day planned .... Havalah was going to get her picture taken again at Jcpenney, I was going to go through and wrap a lot of our xmas gifts and take inventory of what we still need to get ..and I have a lot of ebay packaging to do. I was up til three in the morning last night packing things up. We also really really need to get plastic wrap up on our windows because our place is freezing! Wen have to turn the heat up really high in order to get it almost comfortable and I know it's costing us a fortune, all of our windows sills have leaks, so the plastic wrap stuff will help a lot. It's just hard to get everything done. We never did get our leaves raked, but now they're covered with snow, so i guess we'll just have to deal with it in the spring. we finally got an add in the paper for our downstairs apartment starting today.... so Steve will have to be running home a lot to show the apartment, or I will. It's just craziness really, but somehow we'll get what we can done. In good news we were aproved for another year of katei beckett medicaid, so we'll have that as a back up insurance. I was really concerned that we wouldn't get it this year so it is a huge relief! I keep seeing our insurance papers come in ... we get about 25 envelopes a week... and the bills are just staggering. Right now we've paid our out of pocket for the year so between insurance and medicaid everything is being covered, but when you see the huge numbers and the overwhelming amount of claims ... you can't help worry about hitting the insurance max! So the fact that we are aprooved another year is a weight off of my shoulders. Anyhow that's the scoop! I'll post again later with our room number and telephone number. We're still talking about surgery next week, so right now i feel like we're going in to stay for awhile, but you never know. We're always happy to have visitors as long as they are healthy! And it is really helpful to have someone come play with Havalah for a couple hours so we can run home or run errands etc. When it is just Steve and I splitting our time between work and the hospital we really get worn out, and nothing gets done! Please pray for us for strenght and patience, and for Havalah to get better so we can stay out of the hospital, and maybe be able to spend the holidays with our families. thanks! Kristen   Next >>

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