Day 12, surgery 4

Greetings and salutations!

Today Ezekiel had his 4th surgery in his young life. This one was to install a Broviac catheter, which is a more permanent IV site. They were previously using his umbilical stump, but that was no longer stable. He handled the surgery like a champ, as usual. It's insane to me that my son having surgery has become an almost daily occurrence, but here we are. In other news, he is no longer on his nitric oxide, which means that his lungs are handling gas exchange more efficiently! His oscillator settings also continue to improve... like a boss!

This dude has got some elf ears going on

That's it for updates, so today I also wanted to cover something that's been on our minds since week 20: expectation management. I've shared a lot of Zeke's progress with you, but I haven't shared what his condition looks like long term.

Firstly, let's cover the lungs. He's made some great progress lately, but he's certainly not out of the woods. Remember, it was only a week ago that they felt his prognosis was so grim that they considered ending treatment. It is possible that he will progress enough to no longer need lung support, but it is also possible that he could need to be on a ventilator for years. That doesn't mean he'd have to be at the hospital the whole time, there is a home ventilator that Jenny is more than qualified to operate.

Secondly, his kidney issues. There is no scenario in which his kidneys get better, kidney damage cannot be repaired. We are currently waiting for his dialysis catheter to heal so he can start peritoneal dialysis. At first, this form of dialysis must be done by hand, once an hour, around the clock. Once he gets bigger, he would be able to handle larger volumes of dialysis solution and could use a dialysis machine. If dialysis is successful, we've been told to expect a hospital stay in the range of 7 months, so this will be our home away from home for some time! Jenny and I would eventually be trained to use this machine and could perform dialysis at home until he is big enough to get a kidney transplant. He'll need to be about 20 pounds, likely around age 2. Even after all that, it's still not over. Transplanted kidneys only last about 10-15 years. When his new kidney fails, he'll have to go back on dialysis and wait for another transplant. This is all best case renal care. On the other side of the spectrum, we have the ever dreaded worst case. Ezekiel's dialysis catheter could leak, and he could get an infection in his peritoneum. These infections are difficult to treat, and if treatment is unsuccessful, it would be fatal. But if Ezekiel's peritoneum is half as tough as he is, he might not even need antibiotics. Give that dude a tums and let him do his thing.

Jenny doing oral care. One of our favorite parts of the day!

All these are just possibilities though, and Ezekiel will continue to write his own story. Whatever happens, his mother and I will always be right next to him, every step of the way.

As always, thanks for reading and for caring.
Caleb