A rough few weeks

 

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. Saying his belly hurt, he 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-ray and CT scan, on Tuesday his GI team used a scope to manually dilate the stricture to allow food to pass. This was mainly successful, but the amount of dilation achieved was pretty small as they didn't want to perforate the intestine wall. We had a positive conversation afterward with his team, but more dilation may be necessary in the not-too-distant future.

Garrett hasn't eaten a meal in almost 3 weeks and is very frail. He's been poked and prodded for days, so he's frustrated and generally in PTSD mode now. (He's still being sweet to me and Jill though, so that's always appreciated. :) )

So, where are we now? Garrett still isn't eating much; it takes a while for someone to bounce back after 3 weeks of refusing food. Garrett had an NG tube inserted earlier this week to give him supplemental nutrients, but we decided yesterday with his GI team that he should get total parenteral nutrition through a PICC line instead. (NG tube feeding functions as a supplement to eating, it won't supply enough calories on its own to overcome his calory deficit and allow him to put on weight.) TPN will provide him all the nutrients he needs to help him move forward more quickly. Because the nutrients are all delivered through an IV, it won't fill up his belly and he can eat at the same time and start to ramp up food in a way that he's comfortable with. 

Garrett and I are in his room now, waiting to be taken down and have him sedated before the line is inserted. 

More to come...