So there we were – admitted to our ninth floor room. Craig had left and it was just Gannon and I.
Gannon slept for most of the afternoon but was fussy enough he always wanted me to hold him. He was prescribed oxycodone which was a pretty strong narcotic pain medication and we gave that to him but sparingly because it can really cause constipation and God knows Gannon doesn’t need that.
The child life specialist on the floor found out it was Gannon’s birthday and brought him toys! Not just to play with, but brand new toys still in the package for Gannon to keep and take home! How sweet was that?
We ended up getting to bed around 10 pm. By 11 I woke up to our night nurse Jody talking to someone in the room. She was on the phone with anesthesia and paging them to assess Gannon. His breathing was worse again and he had that barky coupy cough that he had after anesthesia. Gannon’s oxygen was okay but he was working to breathe.
The urology resident also came to assess him and agreed that we need to give him a breathing treatment called racemic epinephrine which is specific to the upper airway. Gannon wasn’t able to get any more steroids because it had only been 12 hours or so since his last dose.
That really helped Gannon and we both went back to sleep. I was so dang tired – also keep in mind I had been up since 4 am the day before. I didn’t wake up until 8 am – the pull out couch as actually pretty comfy!
The nurses reassured me that they had been taking care of Gannon and that Dr. Storm would be rounding soon. Of course when he did come, Gannon’s breathing still wasn’t super and he wanted to keep him for just a few more hours to make sure he didn’t “rebound” from the racemic epinephrine treatment which means that his airway would swell up really fast again.
I ordered breakfast on the room’s tablet – check this out. I can browse the internet, watch Netflix, order food, control the TV, review test results, see who is on my care team, see scheduled medications for Gannon, it is so cool!
We ended up going on a walk around the unit. It you’re familiar with the University of Iowa’s children’s hospital, you may know they are known for the “Iowa Wave.” Kinnick stadium is right across the street from the University of Iowa’s children’s hospital so during every home game during the third quarter, the entire stadium turns and waves at the children watching the game from the hospital. The athletes do a ton of PR with the children’s hospital as well. It’s really a cool thing.
I wanted to get out of the room for a bit, a volunteer came and asked if she could take Gannon for another walk – YES! That was exactly enough time to get some air, get some coffee and refresh. By then Dr. Storm had rounded and we were ready for discharge! I’ve been in the hospital enough to know that “ready for discharge” means “you might leave in three hours.”
They coordinated our appointment that was originally scheduled for Thursday morning which is a texture swallow study so we got that taken care of before we left so we didn’t have to drive back the 2 hours both ways the next day.
The swallow study was disappointing. Gannon does okay with graham crackers, pudding texture, milk, puree etc. Anything more than that Gannon coughs, gags and chokes. Well they did the test. We found out Gannon does great with graham crackers, milk, pudding and puree baby food! Seriously – that’s all they gave him. I pointed out that yes we already know he does well with those foods but try giving him a tiny piece of kiwi and see how that goes. *sigh*
Not to mention, Gannon is usually so calm and chill for tests. Not the swallow study – he was MAD. It did not go well. To have put him through that to find out what we already know was annoying. Not to mention it delayed our discharge by about 3 hours.
We made it home about 6 pm, ate some pizza, bathed the kids, and we were off to bed. I dosed up Gannon with Tylenol and Ibuprofen. Everything went just fine until 4 am…
Okay – off to bed. Check back again tonight at 5:30 pm for hopefully the fourth and final chapter of this roller coaster of a week.