by So… We’re home. And we’ve now surpassed the length of our previous at home stay run too. We even managed to get to and from a Dr appt with only “minor” panics. (suction machine stopped working and I had a lapse of memory as to if I packed the right number of oxygen tanks — good news? I did!).
The only thing that’s changed between the hospital stay to our dr appt is that we needed to get some mouth swabs for his thrush. Which he hates. Passionately. He throws up every time we give them to him so far, so we have to plan to do it on an empty stomach.
He’s been a little more pukey since the stroke too, so we’ve been slowing down his feeds and venting his stomach more to keep the gas down. Nothing truly exciting, but if you’re looking for something additional to pray about, please direct prayers towards his puking minimizing and him keeping his feeds down. Being dehydrated and losing weight aren’t good plans for him with everything else he has going on.
His stroke symptoms are relatively unchanged this week. It’s going to be a bit of a long haul. But he’s happy and playing even without that other side.
I took a few pictures today for a friend who is heading home with a kiddo with a trach soon that show just a little bit of how much stuff we have. And this is just the cart that as keep with him at all times. He has machines and drawers and boxes of supplies in his room too. Normal kids come with a lot of stuff. He comes with a plethora. I have some stuff I wanted to order from 31 so launched off a party, the link is here ( https://www.mythirtyone.com/…/shop/Party/EventDetail/9330791 ) no obligation of course, but if you were thinking of ordering something anyway and want to help us earn some hostess credits, we’d appreciate it!
Today was the first day I’ve had AJ all to myself with no nurses while dad was at work. Averie was here playing with her friend, but largely we were on our own…. …and I’m still in my PJs and have barely managed to eat anything. Definitely is a learning curve to managing him and all his meds, treatments and miscellaneous needs. I’m used to doing just the miscellaneous things while the nurses managed his meds and feeds, and being able to sleep when he sleeps – which doesn’t work at home alone, so it’s a bit of a change. But he’s been full of smiles and playing most of the afternoon, so at least that much is right. 😊
Now we are just making sure the nurses we do have are trained and know AJs specifics and are working on getting more nurses on staff. The nurses we have had this far have been wonderful, and AJ has definitely thrown some doozies at them right out the gate. His next appointment isn’t until the end of the month, which seems so far away! His birthday is also around the corner, so I need to figure out what we will do for that — and also make sure we squeeze in a party/sleepover for Averie next week too.
Dads home now to take over, so I’m off to find some food and a bath! Thank you to everyone for all of your support and prayers as always!
