Well, this official update sure took longer than planned, so now it’s an extra long one. Thank you for your patience and for those who follow on Facebook, some of this may be old news.

On Saturday, August 28, Jonah had a bit of a setback in his recovery process. For a few days, Jonah was breathing faster than normal and was fussier than ever. His hemoglobin was also very low. On Friday evening, after some high-oxygen therapy, the doctors decided to do a CT scan to make sure everything looked fine in his abdomen. Lo and behold there appeared to be a new, tiny perforation in his ileum (small intestine) that was leaking into his abdomen. While this did not explain the low hemoglobin, it would certainly be the culprit for the discomfort and lack of space in his belly. It also warrants an emergency procedure to avoid damage to his abdominal tissue, organs, and potential sepsis.

Before lunchtime on Saturday, Jonah had a blood transfusion to help increase his hemoglobin. By lunchtime, Jonah was back in the operating room to fix the leak. Would you believe the surgeons removed 750 mL of fluid? That’s 25 oz, or a large S’well bottle, or a fifth of your favorite adult beverage. They sealed up the tiny leak (smaller than the tip of a pen), which was thankfully nowhere near his new liver.

The theory about the leaks is that when the surgeons were preparing his abdominal wall and intestines during the transplant surgery, a cauterizing-like tool must have nicked his ileum. It’s not common but does happen. Anytime you open the abdomen, you initiate adhesions being formed. So Jonah had some adhesions/internal scarring from his Kasai procedure and the surgeons needed to clean them up before his transplant surgery. The reason the leak wasn’t detected sooner is likely because it didn’t exist and opened up when we first introduced post-transplant formula feeds.

Unfortunately, this additional surgery meant Jonah was restarting the recovery process. He was intubated, still breathing quickly, had a few episodes of bradycardia in his sleep… the symptoms go on.

Jonah has a history of bradycardia post-operations, so he had an EKG that confirmed his heart rate was fine, as expected. For the breathing, a few therapies were tested and a CPAP did the trick. We also discovered Jonah still has Parainfluenza – you know, the common cold he had on August 1 at the University of Maryland Medical Center. The cold may be contributing to his breathing, along with all the tubes in his nose. 

Over the last few days, Jonah has been doing better and seems to have turned the recovery corner. He smiled – for the first time since before transplant surgery! His PT and respiratory therapists are all very happy with his progress, and everyone agrees he just wants to EAT! Since his second procedure was on his digestive system, he has not been allowed any formula – just TPN (IV nutrition). We somehow negotiated tiny sips of Pedialyte and Jonah gets real salty if you take the empty bottle from him.

Going into this Labor Day Weekend, Jonah will be attempting some formula feeds by mouth and with his new ND tub. We’re also hoping to wean him completely from the CPAP so he can maintain a healthy respiratory rhythm on his own. 

Please pray he continues to recover well and regain his strength (and baby rolls). We pray he and Sean return home next week to transition to a smooth home recovery. 

Enjoy your long weekend, and we have more updates coming soon!