Thursday, September 19, 2013

Kasai Surgery Day-"Prince" Charming

Since I can't really relax or sleep I decided to write a little to clear my head a little.
This was probably the most emotionally draining day of my life.
Our day at the hospital started at 11:30. We were admitted to pre op and started our day of waiting.
And it was a long day of waiting...
Philip's surgeon Dr. Prince came to speak with us and after reviewing all his background again he decided he didn't think we would gain anything by going in with the camera first. It would only waste time because he believed Philip really did have Biliary Atresia. So we agreed and they finally took Philip in at 2:45. I didn't get to bring him into the room, I handed him over to the nurse. One of the hardest things I've ever done. Off to the waiting area we went, tissues in hand. Around 4, they said there was someone on the phone for us. My heart skipped a beat but it was the nurse telling us they had just finished the cholangiogram(where they inject dye to kind of see where there are blockages in bile ducts and gall bladder) and were mapping out there plan. Around 6:00 the phone kept ringing in the waiting area but the volunteer left. We were joking that one of us should answer then A few minutes later a nurse came out. Our hearts skipped a beat again. She said they were just making the first connection but everything was going as planned.
7:45 Dr. Prince (our Prince Charming) came out. He said surgery went exactly how he would have wanted. No complications. Philip's Biliary Atresia was the second most common type. He indeed had a gall bladder and it did indeed drain into the small intestine. Unfortunately it did not have the upward plumbing of the liver to the gallbladder. They removed the gallbladder and ducts and attached the small intestine to the liver. His liver also shows signs of damage from the bile being backed up. We hope the Kasai works and it will reverse over time. I can't imagine having to do this on an infants body. Imagine how small your small intestine is at 8 weeks old!  Dr. Prince is the nicest most compassionate man. He really cares about Philip's outcome and I feel like he is with us 100% emotionally on this journey. He mentally prepared us that Philip would most likely be still intubated in the PICU but Philip had different plans and they were able to extubate him. He really is so strong.  No matter how much my sister and Dr. Prince tried to prepare me for how he would look after surgery, you will never be prepared enough to see your infant with tubes all over the place and a four inch incision across his abdomen. So sad. It was also surprising that he all of a sudden looked so much like Danny! He really is a little trooper.
He is on some pain medication and will be on steroids and antibiotics. He is resting comfortably though. He doesn't fuss much and when he does it is only for a second. He is definitely teaching me a thing or two about strength.
Unfortunately with the Kasai procedure there is no way to know if the surgery is a success right away. The surgery went as well as can be expected but we will have to wait and see over the next 4-6 weeks how his body does and if he actually has the bile ducts to drain into his small intestine. The waiting is the hardest part. How do I get through the next few weeks? How do I keep my sanity? How do I not drive myself crazy? I have absolutely no idea!
We're also so thankful to everyone for their prayers and good thoughts. The support we have been shown today is amazing. So overwhelming. Thank you to everyone especially our families who were with us today on this emotional journey. We know it isn't easy for you either but appreciate everything you do for us.




1 comment:

  1. Hello!
    Thanks for sharing this. My daughter got diagnosed with biliary atresia. She just had the kasai procedure last week. Everything is been so fast, mixed of emotions, but I have my faith in God, that He is in control of everything. She will be a month only this may 4th. I declare healing in your son in the name of Jesus, absolute healing in his liver. All my blessings to you and your family. Thank you again for sharing and as a parent to know that we are not alone in this. I'm in the wait now to see how the kasai procedure worked. The surgery went great. We have strong little ones. 😊

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