Updates on Havalah

By: Kristen Date/Time: 2/2/2006 12:43:41 PM Update: Well Havalah's still doing well ... but two of our liver friends are back in the hospital. Natalie who is just a few months younger than Havalah is celebrating her 1 year transplant anniversary next week. We just put a little gift in the mail 2 days ago, and the very next day her bili has jumped to 12 and they're being admitted. It's a little scary, not knowing what is going on with her, and it's scary seeing somoene sle having big issues at a year out, esp since Natalie has had a lot of the same complications Havalah has. So now I know how you guys feel .... anxiously waiting for an update! Natalie has a website at http://www.nataliebear.com/ in case you want to check out how cute she is. AND our friend Annika ... who JUST got out of the hospital, and who just got incredibly good news last week ... well they thought their bleeding problems were resolved, or at least taking a break , then they get home and right away ... fevers and then another bleed! For those of you unfamilar with the idea of bleeds .... kid's with liver disease .. pre and post transplant can develop varices in their veins, I think a varice is a weak spot, or like a bulge of sorts ... but I am not sure, anyhow at one point i believe they burst or start leaking ... and you find blood in your stool, OR sometimes kid's start vomiting it up. It can be very large amounts, and it is often life threatening. Well i hope it's nothing Havalah will ever experience but it's just one mroe thing to be on the look out for ... and Annika has had bleeds like crazy... Her family has been in the hospital since november , and were in quite a bit of october as well. They had the unfortunate experience of being in the ICU over the holidays, which is quite a bit worse than what we went through. Annika's website is at http://www.moreena.blogspot.com/ Both of these little girls are at Children's memorial hospital right now, so not even that far away! Today is also Cheryl's birthday (Haley's mom) In case you don't know them, or don't remmember my post about it, Halay is the amazing 11 year old girl that passed away in October. Their family was such a central part of our liver community and it's hard for all of us, to deal with her death but her mom is having a really rough time, and it's harder around special occasions. I think special occasions make you stop and think ... about everything that will be different in the future, and they remind you of special memories from the past. So while it may seem silly today I feel a little bit of well-child guilt. It's the most ridiculous thing int he world, but I know plenty of you with healthy kid's feel it too. So next time Havalah is the one having a rough time, and you feel bad that your kid is doing great, remmeber I feel the same way when she's doing well, and one of my friend's kid's isn't. Havalah just brought me her Diego toy with globs of lip balm smeared on it's face. She's been a little obsessed with using my lip balm for awhile now, but she just got this strawberry shrotcake toy from mcdonald's with lip balm in it ... and has figured out how to get the top off. So the last day and a half she has been not only using the lip balm on herself but has now branched out to using it on her toys.   By: Kristen Date/Time: 2/8/2006 2:22:36 PM Update: Another long tedious doctor's appointment yesterday morning. We had labs done the night before, so i was hoping it would be shorter than they have been but we were still there for just over 2 hours. Sitting in a tiny little room, early in the morning with a cranky 2 year old, inbetween people coming in to tell you how concerned they are that your child hasn't gained weight, is not my favoruite way to spend the morning. So I was pretty sure Havalah hadn't gained any weight going into the appointment so I was allready feeling a little defensive about it, and then lately they have been weighing her on the big kid scale dressed, and this time they decide to weigh her on the baby scale naked, so it actually looks like she's lost weight when most likely she just has gained 0. Really either way it's about the same, and we absolutely realize it's a problem, and we think about it every day. So it's annoying to have 4 seperate people come in to talk to you about it, and stress to you it's an issue, as though you think it's no big deal. Lately I'm not always feeling like I'm on the same team as Havalah's healthcare team. Really it might just be partially my perception of things, because I am still really just feeling liek we all need a break from all things medical. Maybe now that the immediate concerns seemed to have evened out a bit, and I've stopped worrying that Havalah is going to die (soon) I've started feeling sorry for myself. Or maybe it's just the continueing weather, or thinking about all fo the things we've missed this fall, I don't know exactly what it is, but I'm not feeling overly positive or cooperative. I'm feeling downright disgruntled about everything. So as far as Havalah's weight gain goes we can either start seeing food psychiologists about her having a food aversion, except she absolutely does not have one. Or the other option we've been given is to put her NG feeding tube back in temporarily. I hate the idea of doing that, but at least I feel confident it will work. So far all of the nutritionalists we have seen have been zero help. None of their sugegstions have worked, and I have long ago tired of talking about it. Maybe the nutritionalists should talk to Havalah directly because she doesn't appear to have read their books, or react the way the kid's in their textbooks react. Maybe if someone actually funded some studies on nutrition or weight gain for kid's with liver disease, they might have some answers. Going over what we do or don't do on an everyday basis so they can tell me what we are doing wrong, or what we should be doing, isn't helpful when all their textbooks are written 90% about healthy kid's with healthy kid eating problems, and I don't have a ton of time to waste, or a ton of money, because their advice doesn't come for free. Havalah's ALT is up again too, to 57 from 40 a week ago. This is really no big purprise since we just went down on her prednisone again, but everyone is anxious to ween her from the prednisone so it would be great if her liver could adjust to life without it , a little more smoothly. Right now no one is concerned about her high ALT but it does buy us another trip to children's hospital thursday night for labwork. My guess is, her ALT will not be dramatically changed in 3 days time. Everything else on her labs looks pretty good. We also were able to get rid of her bile bag yesterday too, and because of that we can also stop giving her the nasty tasting sodium three times a day. I would have been a lot more excited about losing the bag if it hadn't come with a weight gain lecture. I wish Steve had brought her to the appointment yesterday instead of me.   By: Kristen Date/Time: 2/13/2006 9:28:06 PM Update: Well, we did put the feeding tube in today. Havalah was pretty darn angry about it, but she's left it alone. I think we're going to start doing 3 cans of formula a day through it, done at 3 seperate times in bolus's (which means a quick drip) and then after maybe a week or so, we'll start really pushing her to drink the forumla instead of getting it through the tube, and see how that goes. I don't want to have it in for a long time, but I do want to stop having anxiety about weight gain, and her looking thin etc. She is still healing from the last surgery so I want to amke sure she is getting the calories she needs. I do still feel guilt aboutputting the feeding tube in though, Like maybe we should have been trying harder to force her to drink it the normal way. It's just hard to fight over such things with a 2 year old. Last night she had a ridiculous tantrum for way too long because she did not want to go to bed, and if she was going to sleep at all she wanted to sleep on the couch, and she wanted me to sleep there with her. I don't know why she was so stuck on it. We've laid together on the couch and tried to sleep before but always in the morning when she wakes up earlier than normal and I still want to sleep some more. Havalah and Steve went back to green bay this weekend for Roger (steve's dad's) retirement dinner. i was supposed to go too but I caught some sort of stomache bug. Even today I still feel cruddy, luckily neither Steve nor Havalah has caught it yet, which amazes me. Havalah actually has had really dark runny poops for over a week now, but last tuesday when she had a blow out at the doctor's office they tested it and didn't find anything, so who knows. She's never had normal stools for a significant amount of time. She had labs done last thursday and her numbers were still high. She had them drawn again today, so we'll find out the results tomorrow. I wouldn't be surprised if her LFT's were still on the high side though. One of the kid's I've talked about here Annika is still having a rough time. At this point the doctors don't even know what to do with her. To add to that, they've hit the nightmare all of us transplant parents hold in the back of our minds ... they've hit their insurance cap! They've only hit it for the year, not the lifetime max, but since it's february and this poor kid has been int he ICU a lot lately and things are not settled ... they're in a rough spot. So they're signing up for COTA and they're going to do some fundraising. if anyone had ideas or suggestions for them please visit her website at http://www.moreena.blogspot.com/   By: Kristen Date/Time: 2/16/2006 1:13:56 PM Update: Havalah's lab numbers from Monday night looked pretty good. They weren't perfect ... her LTT's were still high, but her ALt went from 70 to 40, and that's close to normal. SO we went down on her prednisone again .... which i am sure will result in worse lab numbers next week. We're now only giving her 1mg of prednisone, so i am wondering if the next step is 0. I will be relieved when (and if) we are ever done with the prednisone AND have lab numbers that are back to normal. It's not really a big concern, I just find myself half-waiting for something new to come up. When we saw the surgeon at our last doctor visit we talked about ehr bile strcitures, because i was concerned they would re-occur because one our freind's Natalie has hasd them re-occur several times. She hasn't had them fixed surgically though either. Anyhow ... we were talking about it and he brought up the point that there are no doctors who have a lot of experience with "fixed" hepatic artery clots. Transplant in general is a new science, then clots in the hepatic artery aren't overly common, and then in over 90% of the caes where you do have hepatic artery clots, you need to be re transplanted right away, they're rarely able to "fix" it. Our surgeon worked with one other child that had that happen, and they had bile strictures 6 months later too, had it fixed surgically, and have not had it re-occur. The whole conversation really made me think though, and realize that the hepatic clot is something that can really have long lasting repercussions.   By: Kristen Date/Time: 2/23/2006 1:24:00 AM Update: Havalah's labs are up again this week. Alt is up to 88 this time, which is the highest it's been since it went down post surgery, but it is not significantly higher than the bumps we've been having. I still think it's just because of the prednisone wean and hope that her body will learn to adjust to life without prednisone, plus she has a bit of a runny nose this week, so who knows, that can affect things too. Anyhow these bad labs buy us another set on thursday night. It's not a super big deal, but it is a pain, and Havalah certainly doesn't like it. We were supposed to see Stacee and Dr. Tolega this past tuesday too, but I called and asked if we could postpone it because we only have one working car right now, and there was nothjing new to talk about anyhow, and I didn't think having her weighed was too important because we started the NG a week ago, so I *know* she's gained weight, they thought that was fine, really it's all about the labs anyhow. i actually like to see both Stacee and Dr. Tolega but was happy to miss the appointment, because I absolutely do not like sitting around in a tiny little room with a cranky anxious 2 year old for up to and soemtimes over 2 hours. So the reason we currently have one car, is that last friday when the weather was bad Steve hit a big chunk of ice on the highway and it did a real number to the underside of our jetta. I think the radiator was busted up and maybe the whole carriage underneath. Since it is over $500 worth of damage we filed with insurance. I always thought we had pretty good insurance, when Steve and I got married I switched over to american family which his family has always used. Both our cars and our home insurance is all with the same company. Currently I am thinking that may change. The accident happened last week friday and the claims adjuster will not even be looking at the car until tomorrow, and they couldn't even tell em what time. if it's late int he day they may not touch our car until friday, and while they estimate it may only take one day to fic it ... if they start on friday and run into any issues at all ... well that will mean not having it over the weekend. So for what should be one day's worth of work we our out a car for at least a week. We work opposite hours anyhow because of Havalah, but not having a car at home means neither of us can run simple errands, or get groceries, or do anything at all, plus if something happens with Havalah or there is a concern, I guess we'd have to call an ambulance. I called someone from our insurance today to find out WHY the delay and she seemed to think there was notning wrong with waiting a week for a claims adjuster, and just argued every little point with me. I hate to have to switch all of our insurance, but if that is normal for them,. I think that's unacceptable. In other news, we filed our taxes, and since it looks like we'll be getting a decent return, we've decided to go someplace without Havalah for steve's birthday/our wedding anniversary. Steve's been talking about going to NYC for the last 4-5 years, I checked airfare prices today and they had tickets from chicago to new york for $142 including all of those fees! So we booked it.... we;re going to new york from april 6th til the 10th, and Havalah will be staying with my mom and Dick in Green bay (with visits to Steve's parents too, I am sure) So we'll be hoping and praying nothing serious comes up before then, or we'll have to cancel. For those of you who have been to new york, please send us your suggestions on what to do while we're there. There are so many things .... I think narrowing it down will be the problem. This past week i was also asked to speak at the ALF flavors fundraising event. I'm a little nervous about it, but I have been wanting to get more involved with the ALF and this is as good of a way as any to get started. I'll be talking for about 7 minutes about our expereinces with Havalah's liver disease and transplant. i am confident i can write up something appropriate, but less confident about delivering it, and lately i've been so emotional about the whole thing .... getting a little choked up is fine ... but I still need to be able to talk clearly! I'm a little excited about going tot he event though too, it's a really fancy, nice dinner, and if we weren't going as guests we certainly wouldn't be able to afford to go. We're also planning to do the liver walk this year which is another ALF fundraiser. It is saturday June 17th, i know a lot of my family is going to be busy right then with my aunt getting married the next weekend, but we're hoping to get some local friends to do the walk with us. It's the standard walk thing where you get pledges ... it's pretty family oriented, so I think it's a fairly short walk. Please email me if you want to walk with us, and we'll be hitting everyone up for pledges closer to the time too. The ALF uses the money raised to run a lot of support groups for people with liver disease and transplant patients and for families too, they also help support research and awareness efforts. So I think that's about it. Aside from her nose being a little runny and adjusting to the NG tube Havalah has been doing pretty well. She's been a little sassy lately, throwing age appropriate 2 year old tantrums. Today she took her first post-transplant bath. She ran and hid and refused when i even mentioned the idea, so i got our all of her new bath toys, and got into the bathtub with her, and after a little while she stopped being vervous and now it is her favorite thing. I got out after about 10 minutes, but she stayed in for over an hour, everytime i would even say her name she would tell me nonono mommy, and my new favorite nuh-huh said all drawled out sounding just like a snotty 12 year old. Finally ignoring all the protests I pulled the plug, and even after there was no water (and I am sure she was cold) she still wanted to stay, and when after 5 minutes of her sitting there I pulled her out she had another tantrum. And then she insisted on taking another bath later in the evening. I'm glad she isn't scared anymore, but I wish she would like it a little more in the middle.

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