We spoke too soon in the last post. Even though Jonah was ready to be moved to the step down room on Wednesday, it wasn't until 11pm on Thursday night that a spot finally opened up. We packed up the PSHU, threw Jonah in a Radio Flyer wagon and wheeled him down to the 2 Hope unit. We were happy to finally get a room, but we also knew this meant our chances of being discharged before the weekend were gone. Luckily we had packed a duffel bag full of clothes, pillows and blankets in the event we had to stay the weekend.
After getting Jonah situated and tucked into bed, we looked at our new sleeping accommodations for the foreseeable future: bathroom, shower, sink, TV, DVD player, mini-fridge, sleeper chair, recliner and of course Jonah's bed and equipment all packed into a 250 sq ft room, give or take. Sleep did not come easy. They have Jonah's monitoring alerts programmed to a very narrow range, so the constant beeping never seemed to stop. Jonah was awake too, mostly by his own free will, but he also had a couple visitors throughout the night, including a respitory therapist come for a chest physio therapy session at 4am. Chest physio therapy (CPT) sessions (pounding on the chest and back to keep the lungs loose and open) has been something we've grown accustomed to lately, but not at 4am.
Before we knew it, the morning rounds and the hustle and bustle of the day had begun. We met with the cardiology nurse practioner who gave us the low-down on discharge and home care. A social worker then stopped by to discuss insurance and home health visits. Next a physical therapist dropped in to advise us on exercises and miscellaneous "do's and don'ts". Then we were given the assignment to replace Jonah's NG tube - this is something that really pissed off Jonah, but Stacie did great! Afterwards, we went to CPR training. Then it was time for another CPT session. Then it was time to try gavage or "gravity feeding" (think beer bong, but with breast milk). By the time 6pm rolled around, Jonah and his parents were tired and cranky. Thankfully Jonah was ready for a good sleep after being up and bugged all day, granting mom and dad with the opportunity to eat dinner (thanks Mrs. Schwab), shower and clean up. Dad also ran to Target to pick up a magazine and the latest seasons of Dexter and Curb on DVD.
We expect the weekend to be much quieter with fewer things on the agenda. We still have the Car Seat Challenge (how does Jonah react in a car seat and parental instructions) and the Swallow Study to look forward too. The Swallow Study is a little disappointing to hear, because it means they suspect Jonah may be aspirating (meaning when he swallows liquid, it may be going into his lungs instead of his stomach – which can cause pneumonia). We’re hoping this is a very precautionary assessment since he won’t be able to continue trying to feed out of a bottle until they are positive he is not aspirating. Although it does not dictate we get discharged, but ideally, we would like to begin alternating feedings via bottle and NG tube as soon as possible. Jonah can’t even try a bottle until speech therapy approves it and/or the Swallow Study results are cleared.
Our biggest challenge is if we can take 2 more nights or more of this step down room. It’s like a loony bin and sleep deprivation could get the best of us. Not to mention we have been at the hospital for 23 consecutive days, starting with the final fetal echo on July 28th and subsequent induction on the 29th. Needless to say, we are eager to bid farewell to our home away from home.