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!
Thank you for sharing your heart Shayli! Your story is so amazing and you are doing a fantastic job as a sweet caregiver of your precious babe. I can't even begin to imagine all that you must be going through. You are continually in my prayers. Truly the Lord does trust you and has so many blessings in store for your family. You shine so brilliantly! Thank you for your bright example!!
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