Christmas Bells are ringing

he's getting so big!

Ding dong, ding dong; Oakley has a hydrocele. I don't think I should post a picture, but hopefully it suffices to say that a hydrocele is when fluid leaks from where the testes descend from the abdomen into the scrotum through the pathway that remains. It's supposed to heal itself, and it is supposed to be painless, but it doesn't look comfortable to me! The doctors believe it was instigated by his highflow oxygen forcing the fluid out of Oakley's guts and downward, so he's off his highflow and on a regular cannula with only 1 liter per minute flowing. He also has some general swelling (adema) that is making the situation look worse. I'm surprised I've made it this far into the blog without lots of joking about balls. I guess I am turning into a real-live grown up! They ran the chimerism tests on day +28 and we got the results yesterday.

biting his lip

Before the final ND attempt; getting a break from tubes

 Everything looks good except his T-cells. Oakley's T-cells are about 75/25 as far as being from his body versus the graft's. All the other cells were about 50/50; with his monocytes being 100% graft! This is awesome news, and they're just going to monitor the T-cells for now. If the T-cells don't follow suite, they might look into repeating the bone marrow transplant, but only if GVHD was becoming an issue or if he lost the ability to produce T-cells. Steps to get outpatient from here are: 1. Gain weight 2. Once weight has been gained, start wearing insulin pump and CGM 3. Respiratory stability: this one's not really as applicable now; I would anticipate that Oakley will be off all respiratory support within a week. 4. All medicine taken orally (other than insulin-obviously) or through ND tube 5. Stretch Goal: Off IV nutrition, and thriving on oral/ND feeds. So, we're getting pretty close.

Trevor and I have our diabetes training this week-which should be a breeze; our nutrition/carb counting class was today, and was supposed to take an hour, but it only lasted 5 minutes because we're so smart. For those of you who don't know; Trevor is type 1 diabetic and has been since he was 9. His younger brother is also diabetic, so is his paternal aunt, and his father was too. We actually are part of a diabetes camp family called Camp Hodia; and they do events all year long; so Oakley will be fortunate to be surrounded by adults who live with the disease and live life without letting diabetes restrict them. Our goal for discharge (and the BMT doctor's) is December 15th. I can't wait! Oakley's ND placement was awful, but is finally over. An ND tube is a feeding tube that goes from the nose to the duodenum (So goes through the stomach, into the top of the small intestine. It's held in the duodenum by the pyloric sphincter, and so there is less chance of the stuff (meds and food) going back up into the stomach and vomited. They wanted it this way so that he wouldn't have any risk of aspirating (inhaling the vomit into his lungs). It took 4 attempts. The first two, they just took the weighted tube with the guide wire and shoved it down 46 or more centimeters. Those didn't go into the duodenum, but just coiled in his stomach. We had an x-ray about 12 hours after each attempt.

doesn't he look so smart?!

The other two attempts were under fluoroscopy (which is a kind of x-ray, and they have contrast on hand to push through the tube to see which organ it goes into. The first one took over an hour, and the doc was getting visibly frustrated. I (Sam) had to help hold Oakley down and was bent over the entire time, getting bile dripped on my arm from the tube's guide wire going in and out. I was so frustrated, that I didn't want them to do a fourth attempt after this epic failure. Trevor volunteered to help hold Oakley down for the 4th attempt. It took an hour again, but this time was way less intense and yet, it wasn't flushing fluid through easily after placement.

The ND 

 We gave it some time, and it finally unkinked and it got to where it needed to be. We went to radiology 5 times last week, and have gone twice in the last 24 hours. I'm pretty sure we could have bought an x-ray machine with all of our visits; but hopefully, we won't need to be going as often any more. Keep us in your prayers to avoid any further hiccups, and to get discharged as soon as possible! We really don't want to spend Christmas in the hospital. There is one benefit to being here this time of year though; visitors bring presents! The Sea-gals (the cheerleaders for the Seahawks) brought build a bear teddy bears this week, and the glasses from Oakley's fit him just right! We couldn't resist letting Oakley dress up a little; we think he looks like a miniature Ralphy from Christmas Story!

It's hard work growing an immune system!

Thanks for your continued emotional, spiritual, and financial support! Love, The Wallaces