Updates on Garrett

Garrett had a very successful surgery this week- one we hope will improve his long term quality of life.  We were told to expect a 1-2 week hospitalization, but Garrett did so well, he was discharged after 4 days! He’s even back to eating a bit of some of his favorite foods.  He has a lot of healing and some physical challenges ahead of him, but for now he’s home, managing his recovery and pain in stride and as cool a kid as ever. Thank you to the wonderful team at the Children’s Hospital of Philadelphia for taking great care of him!

Garrett has now had three roommates so far post-surgery: Day 1 was a 5 month old who was pretty chill, and Garrett slept the entire time anyway. Yesterday, Garrett had an 8 year old boy who had a lot of the same interests. After Garrett woke up a little, they became quick friends and played Battleship and watched Bluey together. This morning at 2am, we got a new roommate: a 2 year old boy who was not a happy camper. He finally calmed down at 4am and we got some sleep. So, we’re pretty tired this morning! Since we’ll probably be here over the weekend, I’ve been pushing for a single room. Keeping my fingers crossed. However, we had good news from the surgeons at 7am. Garrett is progressing well, so we can move beyond crackers to regular food. He’s still limited on food choices because of his IBD and surgery (so, no bacon), but pancakes with a little syrup are back on the menu. So, I wheeled Garrett down to the cafeteria and he had some pancakes and milk. Now we’ll see how he processes ev

 Garrett slept through the night pretty well (less so me :) ). His pain is decreasing, though he’s still pretty groggy after the anesthia, pain meds and lack of food (he hasn’t eaten since Monday, as he’s been NPO ). Today the surgical team stopped by for their morning rounds (6am !!!) and said he can now start clear liquids, and if he progresses well, have some crackers tonight.  Also, they suggested Garrett start to move around the room a little bit, from the bed to the sofa, sit up for a bit, etc. to engage his core muscles. So, all good things. Garrett came in very healthy, so his recovery should be better than it has been in the past, when he was weak and sick. We’ll keep you updated, Stephen

 Garrett’s operation is complete; his surgeon is very happy with the results! Garrett is sleeping right now. Over the next few days, he will feel pretty sore, but he’ll start to feel better as he heals.

  Garrett headed into surgery a couple of hours later than planned. So, he was VERY ready to get started.  Garrett said goodbye to his stoma, (“goodbye old friend!”), gave us some hugs and kisses, and was wheeled out of the room. It’s hard to explain just how excited he is for this operation; he was practically bouncing on the gurney. The operation actually started around 12:15pm ET, and it will take roughly 1.5hrs, so we’ll let you know when we hear more. Thanks, Stephen

 Hi Everyone! Well, it’s been a year since Garrett had his colon removed. When he left CHOP last June, he was weighing in at 37 lbs. (way, way underweight, in the 1st percentile), couldn’t walk down the stairs, let alone up them, and had lesions all over his body. What a difference a year makes! Garrett now weighs 58lbs (54th percentile), played baseball this spring, and had his dance recital yesterday.  So, given that Garrett is healthy and strong, tomorrow he’s ready to take the next step in his IBD journey... reconnecting his small intestines to what remains of his colon, taking down his stoma and negating the need for an ostomy. Garrett will have a long few weeks of recovery, and it will require changes to his eating and lifestyle forever. However, Garrett is very excited to be bag-free; he’s been talking about all the things he’s missed doing (brother-bath with Gibson) and what he can do in the future (head-first slide into home plate)! As always, Jill and I really appreciate you,