Day 254 - Discharge Day (for real this time)!
Friday, September 10th, 2021
We had a list of things that needed to get done prior to Discharge. James needed to get a new Clonidine wean schedule due to the withdrawal symptoms he was having yesterday. We needed to get the rest of his meds from the pharmacy. Lastly James needed to receive his synagis shot to protect him from RSV. We eventually got that all done!
We left in the late afternoon. Packing up the stroller, and then the car, and then back in the stroller, to get in the house is still super nerve wracking. This is life saving equipment and one fast wrong move and James is disconnected. The more Mom and Dad get practice the more comfortable we will feel doing it! Our first pediatrician appointment is on Tuesday, so we have some time to review before traveling again. James loved his car ride and is just taking it all in.
In the evening, Mom and Dad gave James a nice long bath. He immediately was relaxed and loved it. Then one of Dad's sales reps helped us by dropping off one of the smaller office refrigerators so we can use that strictly for thawing breastmilk and medications. We are trying to get James in a night routine where he gets a bath or wipe down, we do trach care, and then he gets his melatonin and goes to sleep. The only thing is the melatonin is scheduled for 9pm and it's a little late. Most little ones are sleeping at 7pm. Not James, he probably starts sleeping around 10pm and then he wakes up at 7am, which is only 9 hours. That's great if you're an adult, but a baby should be sleeping a lot more than that! He also isn't great at napping during the day. Right now his naps are so short because he has FOMO. If anyone has any suggestions or books they would recommend, please let us know!
It's been a crazy 8.5 months in the hospital! It feels like December was so long ago but also just yesterday. It is absolutely insane to think James is 8.5 (5 months adjusted) and we are just now home as a family! Soon our puppy Tommy will join us as well! During this whole process we did not know what to expect, no one knew how things were going to go, no real timeline, tackling things as they came up. We definitely didn't expect to make such close friends in the RNs and RTs that cared for James. Please know that if you're a medical professional that knows James, you're welcome to visit any time. We are only 15 minutes up the road! Anyone outside of the hospital, you'll need to contact Mom first! We have a lot going on and it's pretty non-stop all day (and night). Although James is not a newborn he is medically fragile and we do not want him to end up back in the hospital. Just want to be careful!
Reminder: Have you submitted your lullaby video yet? We are looking to start working on the editing soon. Please get your submission in so that James can remember you forever! ❤️❤️❤️
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