Updates on Havalah

By: Kristen Date/Time: 1/5/2006 12:52:52 PM Update: We're still home and everything is going well. Havalah had labs and a doctors visit on tuesday. her labs looked great! Her chemistry profile which mianly consists of liver/kidney numbers was perfect! Not a single number was high or low. Her CBC which is blood cell counts had a few off numbers but nothing we are concerned about. mostly her red blood cell counts are still a little low .. but they always have been and her nuetrophils in her white count are a little low which means she is a little more likely to catch something, but we've had pretty good luck with that so far. I think we';ve mostly been a little lucky but so far in her life Havalah hasn't had a lot of "normal kid" health issues. She's had a lot less colds and fevers than a normal kid, and never an ear infection or antying like that. it's a little surprising since she had a failing liver, and then was immune supressed but we're not complaining. I am sure we'll make up for it once she starts school. We've been pretty busy since we got home, getting cleaned up and unpacked. Sat my mom and Dick came to visit, Sunday my dad and brother Micheal came, and yesterday Steve's parents were here, I also started back to work on tuesday night and work again tonight. Our house is slowly but surely getting back into normal shape, and i've started working on getting caught up on my ebay stuff. We also have renters downstairs! I have yet to meet them, since Steve did all of the arrangements for that. They do play their music a little too loud, but other than that no concerns so far! So we see the doctor and have labs again next tuesday. our main issue right now is weight gain sicne Havalah dropped a pound and a half since her surgery so she's down to 24 pounds. You can tell just by looking at her. I think it's to be expected since she couldn't eat for several days and is really only now starting to get back to normal, but because it made a big dip on her growth chart they were a little concerned. I'm not concerned at all yet, but if she hasn't gaiend at least some by next tuesday tyhen i would be, and I definately would be if she loses more weight. I don't forsee that happening though. Since surgery she has been increasingly picky about what she eats, but since being at the hospital she has decided she loves bacon. It's not something we normally cook at home, but we do now! I've been making her oatmeal and bacon every day for breakfast and sometimes she wants some bacon with lunch as well. Her other recent favorites are bananas, rice krispie treats and grape juice. As you can see on her guest book we got her pictures back before the holidays. I know Julie holloway mentioned she wanted one .. so Julie email me your address and I will send it in the mail, anyone else that wants one send your address to kristennn@brokebox.com I still have plenty left.   By: Kristen Date/Time: 1/11/2006 5:16:28 PM Update: Havalah had labs and a doctor appointment yesterday and everything went well. her lab numbers continue to look great, and she had gained half a pound in the past week. She still has a ways to go with that since she lost a pound and a half after surgery, but I think it's a good start, and as long as we continue to make progress, I think we're doing well with it. Last night at work out of the corner of my eye I thought I saw one of The fellows from GI, but it wasn't him and I was a little diappointed. It made me realize I really miss a lot of the people from at the hospital. Every day at the hospital whoever the GI doctor on call that week is, you see every day, they stop by for about 5-10 minutes to discuss lab results, or progress, issues etc. and to answer questions or talk about what the plan is. Before the doctor comes around one of the GI fellows stops by. For those of you who don't watch tv medical shows, a fellow is a doctor who has finished their regular internship, and is going into a specialty area. So it's a step only soem fields require between internship and before you become an attending. Anyhow for us the fellow is the person we see most often and consistently and who follows Havalah most directly. When there is a problem, the fellow is the person who gets the page so they are sometimes at the hospital very very frequently and it seems they are almost always "on call" We have been very very lucky in that the GI fellows we've dealt with have been wonderful and we miss them, along with some of the doctors and nurses. It's a weird , sometimes surreal situation with staff at the hospital, for a short period of time they are the main people in your life on a day to day basis. You go through daily ups and downs together, and it is a more intense situation than you normally experience with someone you don't know very well. Then after your child is well, you rarely or never see them. Obviously that's just the way things work, but it's a little sad too. Anyhow, that's just something I was thinking about today. We're happy and relieved things are going well, and that we get to stay home for at least another week (unless something unlikely comes up) I try to contionously remind myself to appreciate being home, and to use my time wisely.   By: Kristen Date/Time: 1/16/2006 12:06:58 PM Update: We'vr had a busy week, always ont he verge of potential problems but so far everything is going well. Last week on Thursday one of Havalah's bile bags just fell out .... I saw the tube hanging and was assuming it had just came detached again so I got all of the supplies set to hok it back up ... and when I went to fix it ... it was out of her stomache! So we called Stacee and she thought we'd have to go to the ER but after she talked to Dr. Schames (the transplant surgeon) he said if she had no fevers or signs of problems it could wait til friday. We also went to flush her PICC line weds night and it was clotted. So friday we went in and had labs drawn, and then saw both Stacee and Dr. Schames in clinic, we had the PICC line remooved, and they thought the bile bag coming out was fine, althouhg not ideal and we were sent home keeping a close eye out for fevers.... not eating ... any signs of pain etc. Well her other bag drained a lot on friday and then stopped. A few times it slowed down and then picked up again so i waited until sunday morning to see if it drained overnight. it didn't so i called and had the GI doctor on call paged ...full thinking they would make us come in to the ER etc. but fortunately ... again they thought it could wait as long as she was doing well. Today we went in for labs ... and they were fine. her ALT is creeping up juct a pinch to 56, but it's still not super high and hopefully it's just a matter of getting her medicines adjusted. Again today i thought they might make us come back to have a better look at the bag and for testing, but they are content to give it some time and see what happens. Every time we don't have to go in ... it's a big relief. her bag did drain out just a little bit this mronring, so who knows, maybe it is starting up again now. It IS really nice just having one bag. It's harder for Havalah having to get poked for labs again, but it's kind of nice having the PICC line gone too. After that last bile bag is gone she'll finally be able to take a real bath again. The only good thing about feeling like you're on the verge of going back to the hospital is that it's a great motivator to get stuff done at home. We've been rearranging Havalah's play area, making room for new stuff she got over the holidays and getting rid of, or packing away old toys. AND last night we took down her crib and switched to a twin bed. Steve drove to IKEA last night to pick up the one we've had picked out for the last 2.5 years. I think it's a good thing we go it now since i don't see it in this year's catalog. You can see the bed if you follow this link ... but Havalah's is pink instead of blue. Otherwise that's about it going on here with us. Tonight there is a local liver disease support group meeting that Havalah and I are going to, and then tomorrow Roger and Val will be in town so we'll be meeting up with them.   By: Kristen Date/Time: 1/27/2006 3:41:19 PM Update: Since I last posted Havalah's liver function numbers have been slowly creeping upwards. Mainly it's been her ALT and it started going up around the same time we decreased her prednisone, so my guess is, that's why. We had a clinic appt on Tuesday and her labs were the worst yet, an elevated AST and the ALT was up to 80.(normal is up to 35) 80 is not super high ... and is low compared to all of the fluctuations before her last surgery but anytime it is consistently going up it is a concern. So weincreased her cellcept dosage and brought her in thurs night and got the results back from that today and her numbers are down. ALT and AST are both 53, which is still up a bit, but much better and going in the right direction. Had they stayed the same or been higher we would have went impatient on Monday for a biopsy. For now at least, the biopsy is on hold and labs will be repeated monday night. Hopefully the cellcept will work! They don't want to increase her prednisone because allready the amount she has gotten is more than most kid's at our center and it can have long term effects on your bone strenght and growth. Other than her labs Havalah has been doing pretty well. Her new favorite things to eat are those little hostess chocolate covered donuts, and spicy jalepeno cheese! Steve's parents gave us some recently and Havalah loves it despite the fact that it is pretty darn spicy, she calls it "hot cheese" She's not a kid that is big on variety. She likes the same foods everyday, she rarely wants to watch anyhting but Dora, and we even read the same book very night before bed. The current one is called "leonardo the monster" and is by Mo Willems. Havalah recommends it. She has also taken to doing puzzles several times a day. We bought some 24 piece puzzles at target ...dora and seams street and she's pretty good at them. After the first couple of times with help she can usually do them by herself. She doesn't "get" that the straight edge pieces form a border on the outside, or that if you need help you can look at the picture on the box, but otherwise she is getting to be quite good at them. She has alos become quite a little mess maker! It's amazing how quickly the living room can go fromclean .. to disaster area. All you need is a 2 year old eating messy chocolate covered donuts for crumbs all over, and to drag out every one of her toys. Her speech has also been improoving dramatically too, which is a lot of fun. Unfortunately she's not always very clear so about 20% off the time she will tellus things quite adamantly but we have no idea what she is talking about!   By: Kristen Date/Time: 1/31/2006 3:18:27 PM Update: TGood labs today , or better anyhow. Her AST was normal, and Her ALT was down at 40. 35 is normal so it's close! It looks like increasing her cellcept worked. The first time we tried it, her numbers continued to go up, so I didn't have a lot of confidence, but I am relieved that it's working now. We are going down a little bit on her prednisone again .. from 3 mg to 2 mg, so I wouldn't be surprised if we saw a little bump in her numbers next week from that, but ... it's only a small difference in amount, so maybe not. In general we are just thrilled to be able to avoid a biopsy and hospital stay. I think that's about it, we're trying hard to improove Havalah's appetite and get some weight gain. Also one of the kid's from our liver friends community had her second transplant this year a few days ago, If you pray, please think of Savannah, she's a sweet little girl frm north carolina, and she has had a rough time the last year. You can check out her website at http://www3.caringbridge.org/nc/savannah/index.htm thanks, Kristen

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