Prayer and fasting

Last Sunday we asked for those who could to fast with us for little Brycen. I know through the power of prayer and fasting blessings come. This week has been a good week at primary's. Monday night they started Brycen on TPN / Lipids ( nutrition through the picc line- which by passes the liver). Tuesday they switched his diaretic and it worked! It was working a little too much, so they lowered the dose. It has since been doing great! Keeping his belly soft and stable. This is what we needed so we could stay at home for longer periods of time. Thank you to those who fasted and those who continue to pray for Brycen. 

Emotions

We had an app. With the liver Doctor on July 26th, since Brycen's belly was getting bigger and his billy levels jumped, I knew we would be admitted. Sure enough, they first put in a PICC line and started IV antibiotics. The next day he got a NG tube (feeding tube) and that was ran continuously. They also decided to ahead and do transplant evaluation. This had been the third time that fluid needed drained. Which lead us to the conclusion that the kasai was successful, however, his liver is so scared  that fluid keeps building up. Which puts him into end stage liver disease. They had to draw blood everyday for about 5 days to get what they needed. He had an echo on his heart, ultrasound of liver, and kidneys. Then Chad and I had to talk with. The pharmacist, transplant surgeon, liver clinic, financial, and social work. At this time we are just waiting for the official call that he's on the list. 

 He was still nursing a little and taking some from a bottle. This slowly diminished. Anything extra besides the NG he would throw up. By Friday he started to not even want to nurse. After several attempts Saturday to nurse, I realized he was done. This was very hard for me. I have always had plenty of milk and my kids nurse so well. I'm just counting the blessing that he got to nurse for almost 4 months. This was very emotional for me. 

We took the girls to the zoo and had so much fun. They got to play on the playroom at primary's while we talked with those we needed. They loved every minute of that. Then they got more goodies while at the liver clinic. They were in heaven. 

The plan was to go home Tuesday, but because they started a new med they needed to observe him. Friday we would be going home. We were in with the social worker when we heard they were thinking about keeping us. For the first time I wanted to burst into tears. When we got back the fellow mentioned his belly had bigger since it was drained the day before. I did not buy this, his belly measurement was just slightly above. This made me so furious! We had been told we could go for the weekend but come back Monday to start TPN and figure out what to do with his belly. After several minutes of trying to convince her we were given That option, she finally went and asked the liver doc and they were fine either way, letting us go Home for the weekend or staying. I was so upset. This was the first time I broke down crying after talking to doctors. Knowing that this was the reality of Brycen's disease, that we will be in and out of the hospital until he gets a transplant. Not knowing when we will and won't be home. Making appointments since you will be going home, to then having to cancel since you will be staying. This was my breaking point of the reality of what lays ahead of us. This is now getting harder and harder on our family. We should be going home after clinic tomorrow and hopefully for a little longer. We have now been here three weeks, with going home for only 2 days. 

Blessings

As we go through trials, it's always important to find the blessings and tender mercies along the way. I know our Haavenly Father loves us and is mindful of our trials and situations. As we recognize the lords hand, this is what gives hope and peace during such difficult times. I think it's important to write down our blessings so we can go back and reflect on them. We have received so many blessings so far, I have followed the spirit twice in getting to the doctor. Brycens vitals were always stable,  this was such a relief. As primary children's can be such a scary place when you first arrive, what a comfort and blessing to have the best doctors, Who are specialized helping our child. The priesthood! Brycen received 3 blessings just at primary's and one before we went. I am forever grateful for the priesthood and the worthy men in our lives. I'm grateful Chad has worked so hard so he can bless our family at any time. It's been such a blessing to have family be able to take care of our girls and that Chad can still work. Our A/C was not working in our van and it was really hot in SLC the first of June. A few days before going home, it began working! This is a tender mercy I will always be gratful for. Insurance...we are forever grateful to have Tricare which has lessened the burden of medical bills. We had been trying to decide for almost a year if Chad should re-Inlist with the guard and once we received brycen's diagnoses we knew that's what was needed. I wasn't so sure at first, since we had just received so much news about our little boy. Now...as we slowly receive bills, I know it was right. As of our Doctor back home, he is incredible and I'm forever grateful for him and his MA. They have seen us on holidays, Sunday's and Saturday's. To have a doctor who truly cares is such a comfort and blessing. They do so much for us and they hold such a special place in my heart. I know God is real and is a God of miracles. I know we will continue to see blessings and I hope we will always recognize them. 

Brycen Chad McKen

Pregnancy with Brycen was normal and healthy. Birth was just as great! Our doctor was out of town and so we had a different Doctor deliver ( I had seen her every other appointment, so I was familiar with her) and it was by far my favorite delivery. Brycen was a 8# 6 oz healthy baby boy. When we were discharged they said his bilirubin was up but he didn't seem yellow to him so we had to go back each day for a few days for checks. By week one he was so yellow Chad and I were concerned and took him in. His level was 21 which is almost danger zone. We were admitted to do phototherapy for 2 days. His levels had gone down enough we went home with the Bili blanket. Then they felt like we were okay and Doctor thought it could be breastfed jaundice. Brycen wasn't gaining as much weight as he should either. In fact he wasn't to birth weight until 5 weeks. So we were just going with the doctor as breastfed jaundice. 

After my 6 week postpartum check I had 4 migraines in 2 weeks?! Something had to be going on. So I scheduled with the doctor that delivered (our regular doc is on vacation) they figured out my problem. However, they noticed brycens eyes were still so yellow.(which they weren't improving) so she insisted a doc see him that day. Doctor carter ordered a panel of blood tests and all his liver levels cane back 3-4 times what they should be. So we had an ultrasound and things looked normal. Then we met with the doctor and he instantly said you are headed to primary children's. I'm concerned this could he biliary atresia. 

Pam had come to the ultrasound and the doc appointment with me. So she also drove to SLC with me. We had to go home and pack as quick as we could. PCMC was expecting us in 4-5hrs. Chad arrived shortly after we got there. Within 10min they team of 4 doctors were in our room and describing all the possibilities with a heavy emphasis on biliary atresia. An ultrasound was done again the next day and they too saw no gallbladder. On Monday they did a liver biopsy which with came back average to light scaring. We were released for a day and a half until surgery. It felt so good to get out and do some shopping. Thursday he had surgery which was about 5 hrs. It was confirmed no gallbladder ( which is not normal to be born with out one) and this confirmed biliary atresia. Surgery went well and everything was just as expected. He had a small blood transfusion, which is normal in this surgery. He is in the PICU today and doing well and should get the breathing tube out today and moved to a regular room. 

The kind of surgery needed to fix the problem is called a kasai, where the cut out he bile ducts on the outside that are scared and not working. They then take the intestine and attach it to the liver so it can drain. There is 1/3 of a chance of being completely successful, 1/3 never working and needing a transplant, 1/3 working for a while but resulting in a liver transplant. Biliary atresia is a very rare condition it's about 1 in every 15-20,000. It is also very serious. We will have many check ups at primary children's. We are so grateful to have been lead by three spirit and for Dr. Tomlinson who saw a concern and Dr.Carter who took the time in his very busy schedule to get us in. We are truly grateful we are at primary's and have the doctors we have. Brycens liver Dr is amazing and so was the surgeon.