New Liver

Author: Chris

The sun rose this morning and it was a beautiful day, all day, here in Boston! Sarah and I woke from our "cozy" waiting room couches around 5am with a call from the surgeon. Dr. Kim said they were ready to start "closing him up" an they began prepping for the end of the surgery.

During the night, the OR nurse was kind enough to update us every 2 hours on the progress. At 9:30pm, two hours after leaving us, his second central line was installed and functional, but the donor liver was still not ready for surgery. The nurse told us around 2:00am that the surgery was well under way.

It was about 8am before Porter was recovering in his ICU room. Nearly a 12 hour ordeal, but less than 24 hours after being initially notified of the available donor organ. We realized at breakfast that we really hadn't ever been away from Porter for a time anywhere close to 12 hours! We were ready to see him, NOW!

Porter shortly after surgery.

Dr. Vakili examining the ultrasound. Blood flow looks good!

Fully extubated (breathing tube removed), a very puffy and very sleepy Porter lie in the ICU when we arrived. He had about a dozen tubes still connected to him, some running post-op infusions, and some draining abdominal cavity fluid. It wasn't long before the other surgeon, Dr. Khashayar Vakili, joined us bedside and filled us in on the surgery.

Dr. Kim and Dr. Vakili replaced Porter's liver with a partial section of the donor liver. The only issue they encountered was some clotting of the arteries while connecting vessels to the new liver. He said it took about 4 tries and a dose of blood thinner before all vessels were connected well and flowing. Finally, connecting that pesky bile duct was the last challenge before they could wrap up the transplant.

The metabolic team joined us shortly after and we had a nice discussion about ammonia levels. What will be Porter's new normal ammonia level? Post surgery, and all day today, his ammonia was hovering around 60. To us, that's a high number considering we aim to keep him a low as possible, and he tends to trend in the teens and 20's when he's feeling good and has the nitrogen scavenger on board. Levels in the 40-60 range may be his new normal.

Speaking of normal, on Tuesday, before our Wednesday trip to Boston, Sarah spent her evening at home labeling Porter's baby food with protein content. Since his diet was so calculated, we needed to know exactly how much protein was in each food serving. I think Sarah was convinced the call for the transplant was weeks or months away! It certainly surprised us both. The food is still good! But, we hope carefully calculating protein content is a thing of the past.

With Porter sleeping peacefully with the help of some pain medications, Sarah and I slipped away for lunch and a stroll in the sunny courtyard of the Harvard Medical School.

This was day 1 of Porter's recovery. The triathalon of recovery and the cautious trip home is ahead of us. We wish to thank everyone involved, especially our family, friends, and coworkers that have shown us what real support and love looks like. Thanks to the UVM team for encouragement and positive vibes. Thanks to the MUHS community for prayers and support. Thank you MUHS Guidance Department for the swell balloons (Porter's favorite!). Thank you Lindsay for dropping by the hospital with a delicious grilled dinner! Thanks to our parents for taking time out of work in order to help us. Thank you Katie for being a cool big sister and best darn 4 year old around!

Goodnight.