in General

Day 28 – Home Soon

Ezra is doing great.

We had a scare there a little over a week ago. Ezra was retaining fluid and producing more so much that he was nearly unable to move, looked 9 months pregnant, and was in constant pain and having a lot of trouble breathing. I had mentioned this before, but after the last update it got to the point where Ezra actually had to be moved to the PICU (pediatric intensive care unit) from the room (literally WHILE I was in the air to San Francisco – what rough timing!), and hooked up to specialized oxygen machines to get him the air he needed. He was in the PICU 6 days, 3 of which I was there, and then the fluid retention finally went down and his breathing righted. There were points in there where his skin was so stretched he had spider veins all over – very scary, but the resolution wound up being spot on with no lasting effects, so amen to that.

He is now back to walking about, playing, talking, and being his flirtatious self with all the nurses. The drs say he can head home Wednesday at the earliest, Friday at the latest, barring anything crazy, which no one sees as a valid possibility. His eating is still very low, but he’s on IV nutrition too, which affects that. The chemo also has a months long effect on his taste buds, so he’ll find things he used to like bad tasting, and vice versa… for a while. The good news there is, they expect this from kids his age, and if he needs to go home with those IV nutritional supplements, he totally can. We have given Ezra nutrition via a nightly pump before, and may very well wind up doing the same now. Basically when he goes to bed at night at home, we’d hook up a pump to his line and h ang a bag, letting it run all night until he wakes up in the morning. Nothing like feeding your baby, eh?

So… basically… Ezra has nearly beat cancer. We still have a few after-care things to do over the next year, but he’ll most likely get scans to verify official remission here in the next month or so, maybe a little longer. He’s successfully gone through 6 rounds of chemo, 2 surgeries, hundreds of hours of labs, tubes in his chest, nose, and central line, stem cell transplant, and more. He’s got minor radiation, scans, labs, monoclonal antibodies (which are very painful, both to try to pronounce and to experience), and more ahead of him. But he’s nearly cancer-free, less than 9 months later. Amen.

Charley is doing well also. They started him on steroids this morning to prepare him for extubation (removing the breathing tube from him) in the next 2 weeks or so. The steroids give his lungs a boost of development, and help reduce any swelling in the throat which would happen from the tube being there so long. He still has a long road – 2-3 months left in the hospital minimum, but he’s doing good on progress.

Whew. I’m ready to be home. I forget what it looks like. Someone said we have a pool? Sounds nice in this heat….

Oh, side note – my trip to San Fran was good. I was there less than 48 hours, really only one day. We covered the new iPhone launch live, got a ton of traffic, and I’m trying to pre order one of them now… but Apple and AT&T are both, of course, down. I know you care. 😉

Write a Comment