After having a HIDA scan, an upper GI, and barium swallow test the following was determined:
HIDA scan showed no bile flowing so there is an obstruction but they cannot confirm biliary atresia or other causes without doing an interoperative procedure to explore what is there.
The Upper GI showed that Harrison did have malrotated guts which requires surgery.
The Barium Swallow Test showed that Harrison doesn't aspirate (get food into his lungs) when he eats, but that he does have a poor suck and small swallow. This is probably due to low muscle tone and that fact that his heart condition makes it so much harder to do anything.
So the plan to find answers and resolve issues is to do the following in one surgery.
1st- They will repair the malrotated intestines and remove his appendix to prevent drs from misdiagnosing later in life due to the appendix being on the wrong side of the body.
2nd- Through the same opening they will peform a liver biopsy to send to the lab to help diagnose the cause of the liver issues.
3rd- Through the same opening they will do a cholangiogram where they will inject die into the gallbladder and watch it flow. If it doesn't go anywhere or stops it will confirm biliary atresia.
4th- They will insert a feeding tube into Harrison's stomach. Due to his difficulty feeding and a future of several major surgeries ahead, he needs to get bigger and stronger so this will allow for him to receive his proper caloric intake without him having to burn so many calories trying to eat. He can still eat by mouth to continuing strengthening those muscles but it won't be his only way to receive his nourishment.
All of the procedures are being done at once so that Harrison does not have to go through so many different procedures.
Considering the fact that Harrison has Cat Eye Syndrome, polysplenia, TAPVR, and malrotated guts, the signs are all pointing to biliary atresia. If this is the case..Harrison will undergo another surgery the following day called a KASAI procedure where doctors will try to create a way for bile to flow. This procedure is only temporary and Harrison will need a liver transplant at some point. It could be shortly afterwards if the procedure fails or even if it works, or it could be years after if the procedure works. There is no way to know for sure. Harrison's other issues may also complicate the procedure and its results. The KASAI is not 100% successful.
But with all that being said God has a plan for him and neither the doctors or us can know the answers ahead of time. I have a peace about all of this at this time. Whether it is a calm before the storm, or God's way of letting me know it will all be ok I am assured that God's hand is in it all. I pray that HE hears the desires of my heart.
Please pray for a surgery that is successful and uncomplicated. Also if it be God's will that Harrison will not have biliary atresia and that his liver issues can be resolved with ease. Please pray for the surgeons and all those involved in Harrison's care.
Praise- Emily got to visit Harrison for the 1st time through the help of some people at Levine Children's Hospital. For the continuous love and support shown to our family by friends, family, and even those who do not know us.
Lisa,
ReplyDeleteI KNOW that God hears the desires of your heart, You are HIS child as is Harrison. The strength and the peace that you have only comes from our Heavenly Father. Chuck and I are praying for you, Jamie, Emily and especially Harrison. When the words will not come God hears the desires of all our hearts. Just know that we are pouring out our hearts to God for you all.
love in Christ,
Jonan Bynum
Our Father hears all of us Lisa, and we are PRAYING for this beautiful baby of yours! I agree with Jonan, that even when the words won't come (when it's hard to even know what to pray for) HE knows the desire our of hearts. The pain and turmoil you are in is not without purpose, but I know experiencing it must be extrememly difficult just the same. I pray that the Lord continues to give you the peace that surpasses understanding. Our hearts are with you, Jamie, little Emily, and sweet Harrison. May God bless your family!!
ReplyDeletehi sweety. i just sent you text telling you how sorry i am to hear all this. i know the results dont look good. i really just have this feeling that i need to get all this off my chest. i love the people in our BG, there are very supportive and keep a good ear to listen and shoulder to cry on. they dont know what its like though. i really do hope you can talk to me about all this some time in the future. when your ready. you need to have the support and common bond with another mother to ease your stress a little.
ReplyDeletewhen cookie was in the NICU they wheeled her into surgery at 2 weeks old. we sat in the waiting room just crying and waiting. i asked the dr when she came out if it looked like CF (at the time CF was the worst case and it had yet to be proven) and the dr told me "ive never seen an abdominal block like this that wasnt CF related" and that was that. the DNA test came back the next day as positive. It just drains the life out of you to get that news. to have that feeling rush over you that you have no control or have no idea what the next day will bring, the next week, month, year..
i dont even know why im telling you all of this... im sure you already feel and know all of this. i just really want you to know that im your girl. im here when ever you need. once you get that baby boy home its going to be non stop and things pile up but you cant neglect your self. your feelings and hurt. stay strong momma. your little boy is a fighter and hes going to get through this. i know that. you need to keep strong for him. <3 you.
Hi Lisa,
ReplyDeleteIt seems every time I check your blog, there is another challenge for Harrison. I know you already know it, but I just want to reaffirm that God holds you and your sweet baby in the palm of his hand. There is a reason for each and every one of the challenges that Harrison is facing. I will continue to pray for all of you that you will feel God's presence with you through each step of the way. We love you and if you need anything that I can help you with I will be more that happy to help.
Dearest Lisa, I am praying for your beautiful baby Harrison! I can't imagine what feelings you are going through, but I know your faith is strong and God is holding you in His arms through all of this. He loves Harrison even more than you and Jamie do. Harrison is precious to Him and He is cradling your child in His arms, loving Him. We can't know God's purpose in all of this, but we can know that He loves you and is right beside you. I am praying for your family and am here if you need me to help with Emily, or in any other way. Please know that I am praying constantly for your beautiful son!
ReplyDeleteLove,Lennie