Day 23

We are 23 days into this Pediatric Intensive Care Unit (PICU) admission, and 16 days post-op from Cataleya's trach placement. She is doing FABULOUS. Seriously, she's got so much more energy during the day and is sleeping better during the night now that breathing is easy for her. She's on very low ventilator settings and there is talk of eventually only being on the vent at night.

We are all trained and ready to go with our trach and vent stuff- we just have to demonstrate our skills in a 24hr stay next week. I've hired 6 nurses to work in our home 16hrs/day 7days/week. Our house was inspected for safety by the respiratory therapist. So, really, we are ready to go home next week.

Whether or not we go home next week all depends on the cardiac surgeon. The plan was to do her next big scary heart surgery in October. Coming home at the end of next week really doesn't give us much time to be home before coming back for surgery. Cataleya is doing so well with her breathing that she has much better chances of surviving this surgery than she did 16 days ago. The cardiologist thinks that it would be reasonable to have the surgery now, before we go home, instead of coming back next month.

They will not perform surgery during RSV/Flu season, so if we decided not to do the surgery right now or next chance wouldn't be until April. By April, Cataleya could be off the ventilator and a very happy, healthy little girl with a great outlook for breezing through surgery. Or, she could get sick during the winter and be worse off than she was this summer. Then everyone would complain about why we didn't do the surgery now.

It seems that every Doctor I've spoken to has a different opinion about the timing of her surgery. Since this is not really a clear cut case, the Cardiac surgeon will really be making the final decision- Either he'll do it or refuse. He is on vacation until Tuesday, though, so we won't have any info about that until then.

We'll be going home next Friday on the vent or in 3 weeks after heart surgery. This does nothing good for the Type A personality who compulsively plans everything.

Overall, we are doing well. It's hard to be in the hospital this long. We finally can hold her again and she is really happy. Not seeing my husband and son everyday is sad, though, and I'm eager to get home. Even more eager to have Cataleya well- so I'll be OK with moving on with the surgery if the surgeon wants to.

The risk of death in this surgery is not something I like to think about, but it is on my mind more frequently as we get closer. I just have to think that all of this can't be for nothing. Cataleya is life. She oozes energy- you just feel more alive when you're with her.. It's unimaginable that death would come near her. Babies aren't supposed to die and I'd like to live in that world where bad things don't happen to innocent children- even if I only live there naively in my head just so I stay sane.

Oh! On an adoption note- Cataleya was approved for Social Security. We are sending all the approvals to the Adoption Subsidy Office in Albany and then we'll be submitting our papers to Family court for finalization!! I had started to lose hope that the legal side of things would ever get moving. I can't be Cataleya's Mom in any more depth than I am already, but having her be super-official is exciting.