Struggles

I've been struggling with how and if I wanted to share this...so here it goes.. We have been so blessed and we are so grateful for so much! We made it home Friday night and got to go to our favorite parade the "parade of lights." We had thanksgiving dinner with my family on Saturday and Chad's on Sunday. 

Here's the hard thing for me...It's not always easy staying so positive and collected during our struggles and hard times. As much as I am trying.. the past few days have been so hard for me. Yesterday at church our normally happy easy going baby had a really rough day! As I took him into the hall all I wanted to do was cry. He struggled all afternoon :( then half way into the night he began to gag and throw up, I was constantly in and out of bed. To top that off our Sadie threw up and keep throwing up several times through the night and then at 6 bray began throwing up. It's days like these that are so hard. All I want is some decent sleep. Is it too much to ask that my baby get better?! Normally when we leave the hospital after his belly being drained I feel fantastic knowing this won't happen again for severa weeks or even a month. This was not the case this time. Due to his complications, they couldn't drain as much out, which makes him still uncomfortable. He's still trying to adjust to his new feeding plan. One night is great and the next isn't. He won't take a binkie like used to since being in the hospital this time. All I can think about is when will he be admitted again? Will we spend Christmas in the hospital too? I sure hope not! This momma is having a hard time and I just want my baby better so we can have somewhat of a normal life again. Knowing harder days are ahead I can't even try to think about. My babe has been so happy and I'm not ready to see him get worse. I just pray to understand God's will and his timing. 

Update

Thank you to those you have and continue to pray for Brycen and our family!! We have witnessed time after time the last 2 days that prayers are being answered and miracles are taking place! I KNOW God is REAL! 

This morning when Brycen threw up it got on the dressing for his picc line, so it had to be changed. In the process his stitches all came out and the line came out a few inches as well. Was I a little paranoid when I first saw this?! Of course! They did a chest X-ray and it confirmed it was no longer central and no longer safe to administer through. I have to tell you how wonderful it is to see familiar faces at the hospital. One of our very own SV guys, Mike Head did Brycen's X-ray today! This was so awesome! Since Dr.Book was hoping to get Brycen off IV nutrition (TPN) and some fevers he has been having, they decided to pull the Picc line for now! He now has an Iv in his foot, so they can continue to give Iv antibiotics. Which he will be done with those tomorrow and they will see what and how his body does. They also want to see how he does on the continuous NG feeds at night. If he continues to do well weight wise, with no TPN then no picc will be needed, if he doesn't then in a few weeks a new picc may be placed. 

Results from the HIDA scan...NORMAL! This is the miracle we saw today! No surgery is needed. Why then is there bile in the fluid?! They didn't know! A few of the doctors spent some time researching this yesterday. What they have found is that the blood may have turned into bile. The human body is so incredibly amazing! What happens to the blood still in his abdomen?! The body will re-absorbe it and naturally get rid of it. 

Brycen's first tooth popped through yesterday!! He hates when I try to feel it :) we love this little boy so much!! 

The elemantary school that Brayli attends had a turkey trot today. At the assembly they talked about how the students, k-3, and teachers have been putting money in a bucket for Brycen and they presented that money to Brayli and Grandma Pam. Not being able to be there today was hard! We are so grateful that grandma and grandpa step in and fill our void.

We know the power of prayer is real and so are miracles!  

Update

We finally got to talk with a hepatologist his morning! Not just one, but all three of them!! It was so wonderful to see doctor Book! She even gave me a hug! We just love her so much and are thankful for our medical family here in SLC and at home! 

They told us that as soon as the doc put the needle in for the drain there was instant dark blood. His hemoglobin has been slowly going down, which means that blood has been in his belly for awhile and could be a contributor to the high heart rate. They found bile in this fluid as well. Which brings us to where we are and why this trip is so complicated. They need to find out where the bile is leaking and then get a solution. Which means most likely surgery. All of our questions where finally answered today! This is something that needs the speciality Doctor! It is so different talking with a Resident compared to a Hepatologist. 

How do they find the leak? They will do a HIDA scan (which is only done on certain days) to track the bile. They have already let surgery know what is going on. If surgery is the solution, Dr. Myers who did his kasai will be doing this one as well! 

Brycen is still his happy little self! Kids truly are so resilient! Starting tonight they will start decreasing his TPN/lipids (IV nutrition) and starting normal NG feeds. Dr. Book is hoping we can get rid of the TPN and the picc line before we go home! This is so great as well. If the picc is not needed for TPN then it's better to take it out as the risk is so much greater. 

We have had so many good things happen and we know that prayers have been answered! I'm so grateful for our Father in Heaven and our Savior Jesus Christ! It is through them that we find joy amoung these hard times. It is in and through them that we find comfort and peace. I know the atonement is real as we see it every day. I know my savior lives and loves us and knows what we are going through and these trials only make us stronger. My sister resently sent me a quote that reads " Challenges are at times  an indication of the Lord's trust in you."- D. Todd christofferson 

As I have pondered this and read a few talks on care givers and as strangers have reached out to me, I know this is journey we are on right now is what I am here to do! As I have felt down on myself about not serving those around me as I feel I should, not doing my visiting teaching as I ought to be and letting house work go undone for days, I am still learning that I need to take some time for myself. How can I care for my little babe if I'm not taking care of myself. It is a lot of work caring for someone else the way I do, it's very physically and emotionally draining. It's a hard balance to keep our house running and in order. I know that my savior helps me get through each day! 

Pictures

On the table waiting to get his belly drained 

Grandma Polli caught this huge grin! 

Getting an ultrasound 

Pictures

Brycen pulled out his tube a week ago and off his face! He was loving it and hated a new one going in. 

Halloween 2016

He loves his sisters so much! He is always trying to watch them and loves smiling at them! These are the little moments that bring so much joy! 

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!