Hospital Stay Day 3

So it's the end of day 3 and we're just hanging out. Last night was tough, loud alarms kept beeping and waking us all up, I felt like it was some type of sleep deprivation torture. We'd fall asleep, his IV line would get a kink in it and alarms would sound, nurse comes in to fix and we'd go back to sleep, 10 minutes later his heartrate monitor slips off, alarms sound, nurse comes in to fix and we'd go back to sleep. It was happening over and over again. I thought I was losing my mind and almost just unplugged everything! But who knows what they already have written on his charts about me for spazzing out on them for the past 2 days about the NG tube. I didn't want to add "crazy mother unplugs equipment" to that list. Then Ollie wet through his diaper from all the IV fluids and woke up screaming and soaked at like 3am. It wasn't fun, finally we got some rest from 4-7:30.

Today was nice because there were no tests, just waiting patiently for his surgery tomorrow. we took showers and went for strolls around the floor with Ollie in a loaner wheelchair. It was a million times more comfortable for him than the loaner we have at home so we're taking the steps to get him fitted for a better one. We've watched a lot of the Olympics.




Yesterday I yelled at a few more people about not getting an NG tube and I'm glad I did because he ate his food just fine today. A few different Drs and the nutritionist told me they were glad I fought against it and was his advocate because they can be really torturous for kids. You have to hold them down and shove it up their tiny nose and down into their belly. Then they spend their time gagging because there is something in their throat and sometimes vomiting. No thanks.

His Gtube surgery is currently scheduled for 11:30am, hopefully it won't be pushed back like sometimes happens. At 12pm tonight he will be NPO, which means he take anything by mouth anymore, just the IV.

Chris has been on and off the phone with insurance people, home nursing care people, patient advocate people, medical supply people and so many other people that I can't keep track! He's such an amazing Dad, fighting to get everything our little boy needs. It sounds like we'll have 5 visits of skilled nursing care between now and 8/14 and the letter from the hospital requesting 40 hours/week has been sent to our insurance starting 8/16. We'll see what they come back with, it feels like a negotiation. The home nursing company we will be working with already has 2 nurses set up and ready to go for us which is good, now we'll wait and see what Cigna says. Ok, time to get him ready for bed. Thank you everyone for your texts, Facebook comments, emails and thoughts and prayers. The support we have is simply amazing. Thank you.