After my son went into surgery to receive his new liver due to the damage from Alagille syndrome (ALGS), my husband and I tried our best to manage the anxiety. We grabbed dinner and purchased a hotel room near the hospital for the night.
I wasn’t feeling well, and we needed to try to get some decent sleep so that we could be prepared for when surgery was over. We were exhausted from the events of the day. We slept for a few hours and then decided we should start to head back to the hospital because it would be close to the time for the surgery to conclude.
Once we got back to the hospital, there were about 2 hours of surgery left. We were directed to an on-call room so that we could continue to rest while the transplant was completed. Once they came out of surgery, the surgeons brought us into a break room and discussed the surgery details with us while they grabbed a snack and some coffee after their tiring work. It was such a relief to hear everything went well and they were expecting good outcomes.
After meeting with the surgeons, we were escorted to a family lounge to wait for our son to get situated in his room. When they came in to tell us it was time that we could see him I was nervous. I didn’t know what to expect when we’d be seeing our son for the first-time post-transplant. I knew all the things they told us to expect, but I didn’t know how I’d handle seeing my son.
Read about experimental therapies for ALGS
The anesthesiologist was very helpful. She washed and combed his hair and took such great care of him. She told us he was doing so well she was able to take his breathing tube out and he was breathing on his own. When we saw him, he was still asleep. Once he started to wake up, he was grumpy. We expected as much as he had just been through major surgery. We were able to offer him some pain medications and try to keep him comfortable.
Soon after surgery, he needed an ultrasound of the new liver to make sure everything was working as necessary and there were no concerns. He had to have an ultrasound every morning for 3-4 days to check a whole series of indicators.
One thing I was unprepared for was that he couldn’t eat or drink for several days after surgery. His transplant team said they would allow him to eat or drink once he had bowel sounds and passed gas. It was a big struggle. The trick that got us through was giving him little sponge sticks that he could suck some water from. It would help ease his dry mouth and refresh him just enough.
The day he got a popsicle for the first-time post-surgery was a wonderful day.