Updates on Garrett

Garrett is displeased with the pace of his doctor's discharge planning and feels they are not taking what he says about wanting to leave seriously enough. (I think they are being cautious and considering his overall health, but he just wants to go home.) DOES HE LOOK SERIOUS NOW?  He requested glasses (which he does not require!) to make him look more mature, and therefore be listened to.  He also requested a meeting with his doctor who is the director of CHOP's early onset IBD program which he began with, "Finally! Someone who can make some decisions around here!" If only you could have heard the rest of his conversations today and how he advocates for himself!  The glasses may stay...  

    Garrett’s surgery was successful. His surgeon told us that from his perspective, Garrett’s condition would not have improved without the diverting ileostomy which made us feel sure it was the right decision. The problem the ileostomy is working to resolve was more mechanical than disease related, and now Garrett thinks it’s hilarious that he had what he’s calling a “poop plumbing” problem and can’t wait to tell his friends that.   The day and night following surgery were very difficult and Garrett did not fall asleep until 5am because of the pain he was in. And he only fell asleep because a super star nurse, one he’s had several times before, really advocated for improved pain management for him overnight and he was finally given a medication to help.  I requested the pain team see him on Friday to put a better pain management plan in place. The changes they made allowed for an improved day on Friday and some sleep Friday night.    Today is better for him. He is still very weak, bu

This morning Garrett will have diversion surgery; he'll be living with an ileostomy again. Sadly, the IV antibiotics did not reduce Garrett's inflammation, and he continues to feel sick and is in a lot of pain. It's quite the unfortunate turnaround from the beginning of last week when we thought he was improving and would be discharged. Like before, this is a "temporary" diverting ileostomy, meaning they can reverse it at some point like they did last summer. However, it will take a year or so for us to see how his body responds to medications and what the path forward looks like at that point. In the meantime, we'll focus on making Garrett healthy again and getting him back into the activities he's been missing since January. I won't lie, it's not the outcome we hoped for. But, it's where we are and we'll move forward as a family.

Even though Garrett doesn't feel great, he is still working to feel better. His physical therapist is fantastic. She's using his love of Roblox and art to get him moving to strengthen his body. It's painful, but it perked him up, and I saw his personality shine through again for a bit.

Garrett has been here 15 days now.  Sadly, he's not improving. While it seems that the stricture that landed him here in the first place has abated with the dilation, his mini-colon is still very inflamed. As such, he's in a lot of pain and has stopped eating again. Speaking with the care team, they're unsure of whether an infection or his IBD is driving the inflammation. So, they're going to be aggressive with his treatment today, placing him on IV antibiotics. If he doesn't show improvement in a couple of days on these antibiotics, that will indicate it's most likely his IBD causing this and we'll look at other options then.  

Garrett seems to be having a setback and isn't feeling as good as he was two days ago. His blood panel had some out-of-range components, he's eating less food and is less energetic. Speaking with his care team this morning, Garrett will be staying through the weekend and not heading home like we had hoped.  In the hospital, it's hard to decipher what's going on sometimes. Is he eating less food because something is wrong, or because he just doesn't like the food here? Is he less energetic because something is wrong, because he's eating less, because he's deconditioned after lying in bed for 2 weeks, or is he just bored?  We'll be talking more with them today about possible diagnostics or imaging they want to run. We will update when we know more.

Garrett has been showing definite improvements over the past few days.  The TPN has definitely been helping him get his strength back. He is hungry and eating more each day. As he eats more on his own, the TPN will slowly be paired back. His pain has significantly decreased.  He's been participating in activities here (yoga, art, physical therapy) and playing with Legos. We're working on his schoolwork too. Talking with him, he's acting and sounding more like himself.  The medical team is pleased with his progress, so we're all looking for the improvements to continue. 

  Garrett's been having a tough go recently.  Three weeks ago we went on a great weekend ski trip with one of  Garrett's  best friends and her family, but on the last day we could tell something was off with him. S aying his belly hurt, h e stopped eating that Sunday, portending the fast  downhill  slide to come. After 5 years of Crohn's, Jill and I are better able to read Garrett's "tells", and we quickly organized blood testing and squeezed in a Friday morning MRI. Turns out that Garrett had a stricture in the area where his small intestine had been reconnected to his "mini-colon" (my term, not medical :) ). This was preventing food from passing through and was causing his extreme discomfort. We had already been scheduled to take him to CHOP that following Monday, but wound up going to CHOP Emergency Department over the weekend. Jill and Garrett were in there for 16 hours before being admitted; it was a rough day for them. After an additional x-ra