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My son, who was diagnosed with Alagille syndrome (ALGS), recently underwent ENT surgery to have ear tubes placed and his adenoids removed. Alongside being diagnosed with ALGS, he is also 2 years post-liver transplant. He had to have a liver transplant because of his ALGS diagnosis.

Sometimes, having ALGS or being a post-liver transplant patient can make simple procedures even more difficult. It usually means that he has to take extra precautions and undergo more presurgical testing and approvals than normal. 

In addition, we have to work with our specified anesthesia resource nurse to get everything approved for surgery. It was originally approved as an outpatient surgery, but we were waiting for notification whether we would be required to stay the night after surgery to ensure that he was well enough to go home.

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Because we are both post-transplant (I was his living donor) and he also had renal tubular acidosis prior to the transplant, my son is not allowed to take NSAIDs. This has made recovery harder because the only medication he is allowed is acetaminophen. We’ve been giving him acetaminophen every 4 hours, but sometimes it doesn’t help with his pain.

Read more about comorbidities in ALGS

They did prescribe a narcotic, but only for serious pain. We did have to administer it one time. However, we weren’t able to rotate it with the acetaminophen. There were a few times he was in such pain, they advised me to increase his dose of to acetaminophen try to help manage the pain instead of giving him the narcotic. 

The recovery has been pretty hard for us. I don’t know if it’s related to the ALGS or just being a post-liver transplant, but his recovery time has taken almost double what they told me to expect. There has been a lot of crying and many sleepless nights. Several calls to the on-call doctor in the middle of the night or on the weekend were made to ensure he was okay and whether we were missing something—should he come in for observation? 

During this recovery, I realized how much my anxiety and panic can flare up. I’m always so worried about my son that my mind starts to think about infections and other issues like sacs of fluid that would not be good if left untreated. I am thankful this isn’t a common occurrence with us, and I hope in the future, surgeries are few and far between, because this has been rough.