Update

Last weekend, Brycen's  belly began to get big again, which resulted in lots more vomiting. It grew 2cm in a day. We were scheduled for clinic for Monday the 21st, however, Thursday I called I see if we could plan on having his belly drained Monday before the holiday.  The doctor felt we should come as soon as we could, so we could try to be home for thanksgiving. I called Chad and he left work as soon as he could. We left for SLC at 5:30 and arrived to the ER at 9. They decided instead of direct admission that we go to ER in case they felt his belly needed to be drained right away. After blood work and lots of sitting around we finally got to his room and admitted around 12:30 ish. We did not get to bed until 1:30. 

In the morning I got a call that they could tap his belly at 9. So we hurried to the hospital and then sat around for 2 more hrs :( finally around 11:30 we went for his tap. When they pulled fluid off, it had blood in it this go around. When I first saw it I was so worried. They did the tap on the side with more blood vessels so the resident things they have nicked a vein. Due to this, his heart rate was higher than normal and they decided to do a blood transfusion. Side note... We had been out shopping and got a call from the resident which made it seem like the transfusion would need to take place asap. Once again hurried back to the hospital and waited 4.5 hrs for the transfusion. The transfusion would take 4 hrs. We were exhausted and hungry. We waited for 30 min, first 15 is where they normally see any reaction and he was doing great. After dinner we came back to check on him and then called it a night. 

Today ( Saturday) they pulled more fluid off and hoping to pull more in the morning. This visit has been very frustrating for momma. It seems to me like his heart rate seems normal to what it has been, so I'm confused why they can't keep pulling fluid like they normally do. We have not even seen a liver doctor, which is very frustrating to me. It's hard getting different resident doctors every time we come, especially since some seem to know more than others. I just want to talk with Dr.Book ( Brycen's hepatologist) or Jensen the other hepatologist. I just want straight forward clarification from the doctors who know my child and more of what the plan is. Our day nurse today is a sweetheart, but I'm not very pleased. Just adding to frustration. I asked a half hour ago to start his feed back up and still nothing. Hoping tomorrow is a better day! :) 

Bingo for Brycen

After 2 months of planning, tonight was the night for Brycen's fundraiser, "Bingo for Brycen." The committee members have put countless hours in getting this ready. Over the past 2 months, as I would get the mail and begin to cry, I was finding myself explaining to my girls several times a week how tears are not always for sadness, but for joy, and gratitude. We didn't want to except help at first and then when friends and family approached us about a you caring account, we finally agreed. We have been humbled in so many ways. We had family members travel 2.5 hrs to be there with us tonight and we are so grateful for their love and support, especially on a week night. To be surrounded by all my siblings during such a difficult time means so much to me! I love how we are always there for each other. Tonight we were not only surrounded by family, but friends, co-workers and community members (many who we don't even know.) Chad and I had no idea an event for Brycen would ever be as big as it was tonight. 5 live auction items, roughly 115 silent auction items and many many other donations. We have always known we live in such an incredible community, but tonight we truly saw it for our selves. We hope to be able to give back and help in the future. There is no doubt we live in the greatest place ever to call HOME! We know our little Brycen has angels watching over him and those angels played apart in his fundraiser this evening. To hear someone say " let me see which one is the right one for Brycen," just warms my heart. Little Brycen has been such a blessing to us and has already touched so many lives in the past 7 months. We can not thank those who made this night possible enough! They truly are our angles! We know that the Lord brought us back HOME for so many reasons and tonight was one of them! Thank you to everyone who set up, took down, volunteered in any way and who attended the event!! May God bless you! We love you all! 

Brycen's fundraiser video

A girl Chad and I went to high school with put this beautiful video together for Brycen's fundraiser coming up on November 14th. We are so grateful for the time she has put into it and dealing with me changing things :) 

https://vimeo.com/185157991

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.