| By: steve |
| Date/Time: 4/3/2006 3:08:50 PM |
Update:
testing update |
|
|
|
| By: Kristen |
| Date/Time: 4/3/2006 3:10:39 PM |
Update:
(From 3/31, had some database problems because my host ISP was doing a migration) :
Havalah had labs troday and they weren't too bad. her White blood cell count is low, probably because she is on so much cellcept, which does that. her ALT was 47, which is high, but not super high. Her prograf level was super low, like 2 something, which is probably Why her ALT level was low. SO while they would like to lower her cellcept .. to get her WBC up, they need to wait until her prograf level is normal before they can mess with the cellcept. So we're raising the amount we give her and having labs checked on sunday.We're also discontinuing prednisone, since we've been weening and she was allready on a very very small amount.
In general things are going ok ... but hopefully we'll be able to get everything 100% straightened out before we go to NYC which is ust next week. I also hate to send her to Green bay while her WBC is low, because she seems to get sick every time we go there. Probably because she is exposed to new germs from unfamiliar environments and sees more people than usual. It's hard for us to be constantly reminding people to wash thier hands so PLEASE follow the following precautions :
if you visit Havalah at my moms house, or Roger and Val's house, or she comes to your house please wash your hands immediately upon entering and before touching Havalah. Please do not visit if you have even the slightest cold. Please do not share food or beverages with Havalah. If you offer Havalah something to eat, please wash her hands with soap before she touches her food. These small precautions will go a long way towards keeping her healthy, and while they are very easy, they are also easy to forget. |
|
|
|
| By: Kristen |
| Date/Time: 4/30/2006 7:56:06 PM |
Update:
Hello! I know it's been a long time since our last update. Havalah has been doing really well, her labs have been mostly good, her liver numbers have went just slightly high a few times but nothing that we're concerned about. Her prograf level has been a little inconsistent so we're still working on getting her on the right dose, and her labs have been more frequent because of that.
We went to the Flavors national liver foundation event on friday night where I got up and shared our story before they asked for money for research. The klast few days before doing it I was really kicking myself for having agreed to it, and I was really nervous to the extent of having an upset stomache all night. Other than that the event was fun, and the food was really amazing. I think I did ok speaking, once I got up there and started I felt fairly comfortable, but it was obvious i was reading, and I think maybe I delivered it in too straight forward and un-emotional of a manner, but otherwise I think I did pretty well. Steve typed up the speech for me so I'll cut and paste it for you here :
If there are images in this attachment, they will not be displayed. Download the original attachment
While pregnant with Havalah, I prayed she would be beautiful, smart and king, and she is all of those things. I naively took healthy for granted. I just didn’t realize how many babies are born sick, and I didn’t think it would happen to me.
Havalah was born unexpectedly tiny, just over 5 pounds. She had long legs and long fingers and saggy skin that looked a size too big. She seemed healthy despite her size. She had expressive blue eyes and a sweet demeanor. Havalah was slow to gain weight and her pediatrician noticed she looked faintly yellow and ordered blood tests.
We learned about bilirubin and the difference between conjugated and unconjugated, and why Havalah’s labs showed a possible liver problem. Still- I was confident it was either nothing or something that could be easily fixed. I was more concerned with the blood tests that were starting to be frequent. It’s not easy to draw blood from a tiny baby, and it’s not easy to watch.
When Havalah’s conjugated bilirubin stayed high, we were referred to a GI doctor @ children’s hospital. He ordered more tests, and less than a week later we received a call with the probable diagnosis of biliary atresia. I immediately turned to the internet to find out what that meant for us, and my life changed for ever. Learning that my beautiful baby had a life threatening disease was crushing. For weeks I didn’t go more than a few hours without sobbing. At that point Havalah still felt like an extension of my own body, and it felt like life for both of us was over. All of my hopes, dreams, and plans for her future seemed unattainable.
Biliary Atresia is a rare disease that affects about 1 in 16000 births. It’s a progressive inflammatory process that cause the closure or disappearance of the biliary, or bile duct system. Without a way to drain bile the liver becomes progressively damaged until liver failure. For many of us here, a diagnosis of biliary atresia would have meant death before our second birthday, proceeded by a lot of pain and suffering. Fortunately for Havalah, medical technology has advanced greatly in the last 30-40 years.
At just under 6 weeks old Havalah underwent her first surgery. They made a slight opening on her liver and attached her intestines directly, hoping to create bile flow. One third of the time this surgery doesn’t work at all, another third of the time it works for a few years, and for the last lucky third it works long term. It’s never a complete fix though and even the lucky ones are living with a chronic disease and uncertain future.
Havalah’s bilirubin more than doubled after the surgery and only continued to rise from there. Her Kasai was deemed unsuccessful and it was expected she would go into liver failure within months or sooner. Her skin and the whites of her eyes became yellow, and she was listed for transplant. It was a scary time for us, but with a young child at home there just isn’t time for dwelling on the negative. Havalah was a happy and charming baby, and loved to cuddle and nurse.
Her numbers stayed high, her skin stayed yellow, and she began to scratch herself until she bled, but surprisingly her condition remained stable. We fed her specialized formula through an NG tube to help her gain weight, and we researched and learned more about transplant, and bonded with other families online that were going through the same thing.
As time went by we went from going to sleep every night wondering if the call would come before morning to carrying the pager, but otherwise not thinking much about it. At one point she was even put on hold status. In early august of this past year, not long after Havalah’s second birthday, we were visiting my parents in Green Bay. That afternoon she had climbed the swing set and went down the slide all by herself for the first time. While Havalah was playing, another family was faced with the news that their young child was brain dead with no hope for survival. In their grief this family made the decision to save Havalah’s life, and the lives of several other children, by donating their child’s organs. As we raced back to Milwaukee I knew I should be happy and grateful to be receiving such an amazing gift, and I was, but mostly I was just frightened.
The transplant surgery went well, and was over much quicker than we were expecting. Havalah’s color started to improve right away and everyone was feeling optimistic. The day after transplant was the closest we’ve come to losing Havalah. I was up most of the night sitting by her bed side, but by the time ultrasound came in, in the morning I had fallen asleep. When I heard Havalah startle, I went and sat by her again, but when they finished, I went back to my chair behind all of Havalah’s machines and started to fall back asleep. It seemed like only minutes before her room flooded with doctors and nurses getting her unhooked and ready to transport, and handing me consent forms to sign. Havalah’s ultrasound did not show blood flow to her liver. There was a clot in her hepatic artery, one of the most serious complications of transplant. If blood wasn’t reaching her liver it would quickly become damaged beyond repair, and she would have only days to live without another transplant.
After doing tests to affirm that there really was a clot, they brought her back into surgery, telling us there was only a 10% chance they would be able to fix it. This time we were lucky, and it wasn’t long before a surgeon came out to reassure us that they were feeling cautiously optimistic they had caught it in time, and restored blood flow. Things got better from there and three weeks later we were sent home with lots of medications needed to keep her alive, and lots of things to watch for, but starting to look like a normal kid for the first time.
The first year after transplant is usually when the most complications occur, and so far it has been a difficult one for us. Starting only 2 weeks after going home, we were back in and out of the hospital multiple times, twice for a month at a time. We spent Halloween, part of Thanksgiving, and Christmas at the hospital. Havalah was never a straight forward text book case before transplant, and she wasn’t afterwards either. Havalah had biopsies, blood tests, and everything anyone could think of to help solve the mystery of why her lab results were consistently high. Throughout all of her hospital stays, Havalah acted like a normal healthy kid. She got dressed everyday and begged to spend all day roaming the halls and in the playroom. We did our best to make life at the hospital as pleasant and normal as possible. Which is not an easy task.
Eventually in December, the decision was made to bring her back into surgery for suspected bile strictures. When they re-checked her hepatic artery to make sure it was still stable before such a major surgery, they found it was starting to stricture again. The surgery to repair her hepatic artery, and the bile strictures that were there was a long one. Because of all of the scar tissue it was more difficult and messy than transplant and took over twice as long. Afterwards we spent 2 nights in the PICU and then went back to our home on the 4th floor on the morning of December 24th. Only a week later we were able to really go home and we haven’t been in-patient since.
2006 has been a better year for us so far. We’ve struggled here and there with issues like low weight gain and trying to get her lab numbers and medications stabilized, but mostly our life has gone back to normal. Havalah has started to talk much more, and we’ve gotten rid of the NG tube. She takes all of her medications like a champ, and tries to be brave when she has to get a little poke for blood tests. She is preoccupied with normal kid stuff like sandboxes and cartoons. She loves to play toys and god own slides.
We’re optimistic about Havalah’s future but there are still so many unknowns. We’ve learned to appreciate every day we have with her, and not to take anything for granted. I try harder to keep everything up to date because we never know when we’ll be back in the hospital. I’m grateful to the surgeons and medical staff that care for Havalah. I’m grateful to Stacee our coordinator that is always quick to get us lab results, and to answer questions and listen to me complain. I’m grateful to our friends and family who have done so much to support us, and I am especially grateful to the family that let something positive come out of their tragedy.
I am continuously amazed by the advances that have been made in transplant surgery, and immune suppressant drugs. They’ve come a long way in the past few decades. I am also continuously surprised by how much the field of medicine is about educated guesswork. Because biliary atresia is rare there hasn’t been a lot of research done until recent years. They still don’t know what causes it or how to prevent it. I am told it’s not hereditary, nor preventable, and that it wasn’t caused by anything I did while pregnant. But because they don’t know what causes it , I have to wonder, did I pick up some germ off a door knob? Or was it something I ate? If I had made some small random decision differently, could I have prevented it? I hope that answers will come in my lifetime.
Transplant too is a new field with lots of research yet to be done. Different centers do things differently because there is no proof or consensus on which is best. Kids like Havalah that have transplant at a very young age are an unknown. Will her new liver last her a lifetime? Can someone on immune suppressant drugs live to old age? These are questions that haunt me and thousands of parents of transplant recipients.
Fund-a-grant supports research that plays an important role in the fight against liver disease. In 2006 the American Liver Foundation has awarded 2.6 million in research dollars. Behind me are those who have received research funds in 2006. This part of the evening is about raising funds exclusively for research. 100% of the money raised during fund a grant goes towards our 2007 research grants, it is 100% tax deductible and we hope that all of you will help the American Liver Foundation to continue its funding of these very important research efforts.
|
|
|
|
| By: Kristen |
| Date/Time: 4/30/2006 8:02:11 PM |
Update:
Ok that is supposed to be KIND not KING. I didn't bother praying she would be the king :) |
|
|
|
|
|
|
 [Add Update] |