We didn't make it long at home before we had to head back to Primary's. Alivia's ascites just wasn't improving. Her abdomin continued to grow and be hard. The diuretics didn't seem to be doing much of anything so on Friday, July 15, Alivia and I headed back down. They did a paracentisis again and drained a large amount of fluid off. Her abdomin went from 52 cm to 44 that night and eventually worked its way down to 41 cm where she consistenly has been measuring. The problem with losing all that fluid is that it was weight. She is now back down to less than 11 pounds, so a loss of about 2 1/2 pounds.
So now our focus is on her nutrition. To gain weight, they've put her on a formula called Pregestimil Lipil. She HATES it. I could trick her into drinking 1/2 - 1 oz of it before she realized what it was....but she had to be pretty hungry at the time. We were able to come up with a mix of 1/2 pregestimil and 1/2 similac 24 and add MCT oil to help it absorb better. She drinks this mixture much better. They placed a ng tube to help her take in more formula and calories. She did so well after 2 days, that we were able to remove it before discharge.
They did an ultrasound to check portal vein flow. It was low, but still good enough that no additional measures needed to be taken.
Things were going really good and then her IV went bad. They placed a new IV in the other hand and shortly after they did that, we noticed a rash on her original IV site. So infectious diseases checked it out and they had to run cultures on it. They ruled out all the infections and viruses they thought it possibly could be and determined that the bad IV had just infiltrated the tissue and caused the rash.
We were finally able to be discharged on Saturday, July 23. Boy were we anxious and excited to be back home.
On a good note, as of July 15, Alivia is officially listed for transplant. And they increased her PELD score to 23. YIKES!
Monday, July 25, 2011
Saturday, July 9, 2011
Transplant list
So we just got home from Primary Children's today (Saturday). It was a long, stressful, emotional, intense few days while we were there.
Alivia's belly has softened up a bit, but it actually is larger than it was before. I'm not quite understanding how that happened, but the doctor didn't seem too concerned about it. I think the diuretics must just be working, just very slowly. Hopefully, they do continue to work so that Alivia can be comfortable.
Thursday was a very intense day. We started the workup of getting her listed on the transplant list. It is a lot of meeting with doctors, surgeons, social workers, transplant coordinators, nutrition specialists, infectious disease people. Everytime we turned around there was someone else coming in to visit with us. We had an aweful lot of information given to us. It seriously has taken me a couple days for it to sink in enough to where I even want to look at all the papers and pamplets again. It was very overwhelming and emotional. Ryan said it all hit him last night and kept him awake much of the night.
It is so strange to be discussing transplant and know that very soon she be getting one and the rest of our lives will be turned upside down again for quite a while. We are so thankful to have such wonderful family and friends and church as our support system. We are going to have to make sure we use it...actually there is no way we could do it without them.
Some of the information that we learned is how the listing works. All these evaluations and labs and stuff that Alivia has been enduring these past few days will all contribute to her PELD score. She is given points based on lots of different criteria. The higher the sum of the points, the closer to the top of the list she gets. Right now, they figure she is at about 16. They said most kids are transplanted at 25-30, but there are kids that have also been transplanted at 18. It is a pretty complicated system. She will move up and down on the list based on her level of sickness and the urgentness of her situation. They said most kids wait less than a year for a liver once they are listed. Once all the workup is completed, they meet on Mondays as a committee and make a recommendation to be placed on the list. They have to get insurance approval and once that is done, they are on the list. They said that by the end of next week or beginning of the week after, we should be listed.
Our family has to do a few things in order to be ready. All the kids have to be caught up on the immunizations, Ryan and I have to get Hep A & B immunizations. We all have to get a Tuberculosis test done. These are all precautions against additional sickness. So that is stuff that we are going to work on getting done this week.
Once an organ has been offered and accepted by the tranplant team, we drop whatever we are doing and head down there. They said that there is usually about 8-12 hours to get the transplant done once the organ is procured. So we won't be traveling far from home for a long time. The transplant can take from 6-12 hours, just depending on the surgeon.
After the transplant she will be in the hospital for 2-3 weeks and then they want us to stay in the area for about a month after that just to make sure that all is well and so we can get labs frequently and checkups frequently.
That is just a piece of the iceburg of information that we have been given. I tried to write stuff down, but it is just too much. I'm gonna have to read through the paperwork multiple times before it will all sink in I'm sure.
Yesterday (Friday) she was to receive a PICC line. They tried first thing in the morning and couldn't get it in so they had to take her down and have radiology do it yesterday afternoon. So she was pretty out of it yesterday have been sedated both times. Poor little think would just sleep and whimper when she was awake. They did successfully get the PICC in that time so then I got to learn how to give her some meds through an IV. Luckily she will only be on that med until Tuesday night.
Today, we were discharged about 9:30. We had a good drive home....although very long. We had to stop in Idaho Falls at the home health place so they could give us the IV and the medicine and all the other stuff that goes with it and some more instruction. We also had to get a couple prescriptions while we were down there so it kindof stretched the drive to about 7 1/2 hours. But we are home and Alivia is noticibly happier. We were all ready to be home.
After we got home, the other kids came home from Grandma's house. Alivia was so happy to see them. She was all smiles and even was laughing so hard. I just cried. We've hardly had a smile let alone any laughs out of her for the last 3 days. It is bringing tears to my eyes as I sit hear typing this. It made me so happy to hear that laugh. She is now peacefully sleeping in her own bed. This is probably the best sleep she's had in 4 days.
Alivia's belly has softened up a bit, but it actually is larger than it was before. I'm not quite understanding how that happened, but the doctor didn't seem too concerned about it. I think the diuretics must just be working, just very slowly. Hopefully, they do continue to work so that Alivia can be comfortable.
Thursday was a very intense day. We started the workup of getting her listed on the transplant list. It is a lot of meeting with doctors, surgeons, social workers, transplant coordinators, nutrition specialists, infectious disease people. Everytime we turned around there was someone else coming in to visit with us. We had an aweful lot of information given to us. It seriously has taken me a couple days for it to sink in enough to where I even want to look at all the papers and pamplets again. It was very overwhelming and emotional. Ryan said it all hit him last night and kept him awake much of the night.
It is so strange to be discussing transplant and know that very soon she be getting one and the rest of our lives will be turned upside down again for quite a while. We are so thankful to have such wonderful family and friends and church as our support system. We are going to have to make sure we use it...actually there is no way we could do it without them.
Some of the information that we learned is how the listing works. All these evaluations and labs and stuff that Alivia has been enduring these past few days will all contribute to her PELD score. She is given points based on lots of different criteria. The higher the sum of the points, the closer to the top of the list she gets. Right now, they figure she is at about 16. They said most kids are transplanted at 25-30, but there are kids that have also been transplanted at 18. It is a pretty complicated system. She will move up and down on the list based on her level of sickness and the urgentness of her situation. They said most kids wait less than a year for a liver once they are listed. Once all the workup is completed, they meet on Mondays as a committee and make a recommendation to be placed on the list. They have to get insurance approval and once that is done, they are on the list. They said that by the end of next week or beginning of the week after, we should be listed.
Our family has to do a few things in order to be ready. All the kids have to be caught up on the immunizations, Ryan and I have to get Hep A & B immunizations. We all have to get a Tuberculosis test done. These are all precautions against additional sickness. So that is stuff that we are going to work on getting done this week.
Once an organ has been offered and accepted by the tranplant team, we drop whatever we are doing and head down there. They said that there is usually about 8-12 hours to get the transplant done once the organ is procured. So we won't be traveling far from home for a long time. The transplant can take from 6-12 hours, just depending on the surgeon.
After the transplant she will be in the hospital for 2-3 weeks and then they want us to stay in the area for about a month after that just to make sure that all is well and so we can get labs frequently and checkups frequently.
That is just a piece of the iceburg of information that we have been given. I tried to write stuff down, but it is just too much. I'm gonna have to read through the paperwork multiple times before it will all sink in I'm sure.
Yesterday (Friday) she was to receive a PICC line. They tried first thing in the morning and couldn't get it in so they had to take her down and have radiology do it yesterday afternoon. So she was pretty out of it yesterday have been sedated both times. Poor little think would just sleep and whimper when she was awake. They did successfully get the PICC in that time so then I got to learn how to give her some meds through an IV. Luckily she will only be on that med until Tuesday night.
Today, we were discharged about 9:30. We had a good drive home....although very long. We had to stop in Idaho Falls at the home health place so they could give us the IV and the medicine and all the other stuff that goes with it and some more instruction. We also had to get a couple prescriptions while we were down there so it kindof stretched the drive to about 7 1/2 hours. But we are home and Alivia is noticibly happier. We were all ready to be home.
After we got home, the other kids came home from Grandma's house. Alivia was so happy to see them. She was all smiles and even was laughing so hard. I just cried. We've hardly had a smile let alone any laughs out of her for the last 3 days. It is bringing tears to my eyes as I sit hear typing this. It made me so happy to hear that laugh. She is now peacefully sleeping in her own bed. This is probably the best sleep she's had in 4 days.
Wednesday, July 6, 2011
July 5
Today, Alivia was experiencing a lot of abdominal pain when she woke up. I was quite concerned because she just was not herself. So I called the Liver Clinic and told them what was going on. They called me back a while later and said that they felt they needed to see her, which meant a trip to Salt Lake. BUT the real kicker is that they wanted us to go the ER at Rexburg because they didn't know if she was stable enough for me to drive her down. They were thinking a possible ambulance ride. That really scared me. So I called Ryan, threw a bag together for myself and Alivia and we headed into the ER. Luckily Primarys had called them and told them I was coming and told them what they wanted them to do. They drew blood and ran some labs, did some x-rays, and just checked her out in general. We were there for an hour and half or so and it was determined that she was not a "toxic baby" and would be ok with us driving her down there, BUT we were not to take our time. So I took Ryan back home, did a couple of things and then we headed out for Salt Lake.
We had a safe trip down here and arrived about 8:30 pm. They admitted us and sent us right up to the room. By 9:00, they had a procedure called a paracentesis scheduled for 9:30. What this procedure does is drain the peritoneal fluid from her abdomin. They use an ultrasound to find the best placement, then a local anesthesia. They make a small incision and insert a catheter in to drain the fluid. Takes about 20 minutes. They drained about 280 ml. Not sure how much that is without a conversion, but I think it is right around 11 ounces. Her abdomin went from 46 cm to 41 and it made it much softer. Right away I could tell she was feeling better.
She had a good night considering the interruptions. Her abdomin was enlarged again this morning so they have put her on a diuretic to remove some more fluid through her pee. They also sent some of the fluid to the lab to be tested to make sure there was no infection. So far things are looking good and she is feeling really good. We went for a nice walk just before lunch and now she is peacefully napping. I'm just waiting to meet with someone from the Liver Clinic to find out what our next move is.
We had a safe trip down here and arrived about 8:30 pm. They admitted us and sent us right up to the room. By 9:00, they had a procedure called a paracentesis scheduled for 9:30. What this procedure does is drain the peritoneal fluid from her abdomin. They use an ultrasound to find the best placement, then a local anesthesia. They make a small incision and insert a catheter in to drain the fluid. Takes about 20 minutes. They drained about 280 ml. Not sure how much that is without a conversion, but I think it is right around 11 ounces. Her abdomin went from 46 cm to 41 and it made it much softer. Right away I could tell she was feeling better.
She had a good night considering the interruptions. Her abdomin was enlarged again this morning so they have put her on a diuretic to remove some more fluid through her pee. They also sent some of the fluid to the lab to be tested to make sure there was no infection. So far things are looking good and she is feeling really good. We went for a nice walk just before lunch and now she is peacefully napping. I'm just waiting to meet with someone from the Liver Clinic to find out what our next move is.
Things are changing
Friday, June 24, we got labs done for Alivia. I waited and waited all day for PCMC to call me with the results. Finally I called them and they had not received all the results yet, but the ones they had received were clotted so they were kindof inconclusive. I never received a call back that day with the rest of the results. I was a little antsy all weekend wondering where things were after our last hospital stay 2 weeks ago. Sunday, her belly measured 2 cm larger than it had the last two weeks and then Monday it was another cm larger. This means that she is probably developing ascities. Her belly is really looking large and is pretty hard.
Yesterday afternoon I finally got a call from them and now wish I hadn't of. The news was not good, not what we wanted to hear. Her bilirubin level was higher than 2 weeks ago when we went down to the hospital last. It was at an 11. I talked with Christa, the nurse practitioner, and she said that they are fairly certain that the Kasai is failing. They won't know for sure until we come down next week for her next appointment, but they are pretty sure. So we are now scheduling an extra day for this appointment so that they can start doing whatever has to get done to get Alivia listed on the transplant list. They said a transplant will likely have to happen within a couple of months. I don't know much about the whole process yet, but I've got some research to do and we will become very educated while we are down there next weekend.
Meanwhile, she still is a happy little girl. Although I could tell yesterday that her enlarge tummy is not very comfortable for her. I will have to make sure Christa knows about this new development and see if we need to get her down there sooner than next week to see about treating this. It is so hard to watch her go through this. I know it is only going to get harder the further along we get. She is going to become much sicker between now and when she can have a transplant. It is so hard knowing that. It breaks my heart. I'm sitting here at 5:30 in the morning typing this because I can't shut my brain off and I'm just crying my eyes out.
I know there is a reason why this is happening. I know our Heavenly Father has a plan for Alivia. It still just breaks my heart that my 5 month old baby is going to become so sick. I also know that we are not alone in this. There are hundreds of other families that are going through this too. I just hope and pray that we will have the strength to endure what lies ahead of us.
Yesterday afternoon I finally got a call from them and now wish I hadn't of. The news was not good, not what we wanted to hear. Her bilirubin level was higher than 2 weeks ago when we went down to the hospital last. It was at an 11. I talked with Christa, the nurse practitioner, and she said that they are fairly certain that the Kasai is failing. They won't know for sure until we come down next week for her next appointment, but they are pretty sure. So we are now scheduling an extra day for this appointment so that they can start doing whatever has to get done to get Alivia listed on the transplant list. They said a transplant will likely have to happen within a couple of months. I don't know much about the whole process yet, but I've got some research to do and we will become very educated while we are down there next weekend.
Meanwhile, she still is a happy little girl. Although I could tell yesterday that her enlarge tummy is not very comfortable for her. I will have to make sure Christa knows about this new development and see if we need to get her down there sooner than next week to see about treating this. It is so hard to watch her go through this. I know it is only going to get harder the further along we get. She is going to become much sicker between now and when she can have a transplant. It is so hard knowing that. It breaks my heart. I'm sitting here at 5:30 in the morning typing this because I can't shut my brain off and I'm just crying my eyes out.
I know there is a reason why this is happening. I know our Heavenly Father has a plan for Alivia. It still just breaks my heart that my 5 month old baby is going to become so sick. I also know that we are not alone in this. There are hundreds of other families that are going through this too. I just hope and pray that we will have the strength to endure what lies ahead of us.
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