It feels strange to be here – on the other side of waiting for K’s transplant. We had no clue when it would happen, and were surprised when we got the call last Thursday. As much as we prepared, we were still very anxious at the hospital and waiting until everything actually happened. Saying goodbye to K when they took her to the operation room (at 1:45 am on Friday) was very emotional. Having your baby leave you for something that big and having to wait hours for them to be back with you is stressful and scary.
The OR team was able to update us a few times during K’s surgery to let us know how things were going. Technically speaking things went very well. The donor was a good match and there were no complications during the transplant.
It took the ICU team about an hour or so to get K transferred and settled into her room in the PICU. We were so relieved to be back with her. It was shocking, even though we knew what to expect, to see the size of the incision on her abdomen.
Post Op Day 0 (the day of the transplant) was a lot of us sitting by K’s bedside. It took us pretty much all day to get her pain under control and get her comfortable. She finally settled in around midnight.
Post Op Day 1 was better. Kennedy still slept a lot on and off, but her pain was more controlled. She was able to come off the blood pressure meds and started weaning off of Precedex (the sedative helping keep her comfortable). She was stable enough to remove some of the sensors and the oxygen she was on.
Post Op Day 2 was a mix of things. K did pretty well overnight but had a rough morning. We think it was a mix of pain and bowel pains, but it’s hard to know since K can’t tell us. She seemed to get more comfortable in the late morning and really perked up early in the afternoon. She sat up quite a bit and ate some pudding and macaroni and cheese. This was huge – she got to eat whatever she wanted and we didn’t have to weigh or limit it – so great! Her foley, arterial line (kind of a special IV to measure blood pressure constantly), and NG tube came out today as well. She is also off of Precedex. K also received a blood transfusion to help with her hemoglobin. We are working on weaning her off morphine and onto an oral pain med tonight. Her blood work has been trending in the right direction overall. Some of her numbers were elevated right away post transplant but are now trending back down towards normal. Her team assured us it can take some time for the new liver to “wake back up” and catch up to functioning normally.
We still have some things to work on before K can move up to a regular hospital room to continue healing. But she is doing wonderful overall! Unfortunately we have not been able to hold her yet, so we spend a lot of time sitting and standing by her crib – watching movies, reading books, singing, playing, and just rubbing her hands, legs, and head to help her stay relaxed and know that we are there with her.
Thank you for all of your positive thoughts and prayers. We appreciate them all SO much. Our sweet girl is a fighter and continues to bring joy to everyone around her despite everything she is going through.
Kennedy is in our prayers every day. Thinking of you and continued god’s blessings for her recovery and good health. She is a very precious little girl.