We had to wait for a doctor to come give him the all clear.. waiting. Then they had to show us how to use the oxygen tanks.. more waiting. Then we had to learn how to check his O2 sats.. and more waiting.. then we had to go over his discharge papers. In a feeble attempt to move the discharge process along, we asked Jack's nurse 3 or 4 times to take out the IV from his head. She would say sure every time, leave and never come back! Finally Dr. Ronai came by and took care of it for us. It was my least favorite part of all. They pretty much covered a quarter of his head and hair with tape.. which is why his nurse didn't want to do it.. it looked like it was going to hurt. It did. The poor little guy just screamed-- his tears were his pleas for mercy. Little white flags.
Then, finally, we were free. Jeremy pushing the carriage with Jack, Me trying to steer this ridiculous oxygen tank that I was already cursing 3 steps out of the hospital.
So we're home. What are we doing home for the next (hopefully) 4 weeks? A few things.
1) Gaining weight... well Jack is gaining weight. I'd rather not.
2) Redressing the cath sight on his thigh. Since he is such a chubba bubba, he has role poly thighs and his cath went right into a delicious fold.. leaving it at risk of infection. For the next couple days we have to clean it, dress it and try to keep it as dry as possible.
3) Jack has to wear his oxygen when we are just hanging around and when he is sleeping. If we go to visit family or something quick, we don't have to take it along.. which is nice because these tanks are a pain! Not to mention the tubes. UGH the tubes. Evie has already tripped over them. They never fit him right, are always too loose and they end up in his mouth 90% of the time.
4) We are "spot checking" his oxygen saturation level. If he ever dips down to the 70's with his oxygen on, Dr. Ronai wants to know.
The hope is to keep his oxygen sats up, continue to beef up and let his brain continue to grow. The motto for surgery? Bigger is better.
Thank you, everyone, for all of the love and support throughout this really long, tough week. Gigantic thank you's go out to everyone who helped us out by going out of their way by watching Evie or coming to visit us at Children's.. Mom, Lynne Ben & Gabs, Ricky, Auntie Carole, Angie & the boys; you are all amazing.
Please continue to keep Jack in your thoughts and prayers over the next couple weeks. I will continue to keep posting updates as they come.
For now, it's good to be home. <3
(Thank you Auntie & Uncle! xo)
(Evie was very excited)
(Still happy after such a crap week.)
(Big fan of the mobile, thanks to Elizabeth from child life services)
xo Marissa
No comments:
Post a Comment