by This is gonna be a long one. Bear with me!!!
Yesterday was an incredibly huge day for AJ. And us.
We didn’t say anything in advance, because things in AJs world tend to change in a split second, but yesterday – after 331 days of being inpatient, 2 open heart surgeries, 5 heart caths, 4 cross country airplane flights, 11 ambulance rides, countless blood draws and tests and two different instances of having to consider going home with palliative cares – AJ got to finally come HOME.
Home to a bed that after he was first born, we weren’t sure if he would ever sleep in.
Home to a nursery that I was working on when I went into labor that’s only half decorated. (I’ll be working on this!)
Home to a place where he can (mostly) be off of all of the sensors. Where he’s more free to roam and roll around on the floor.
Home to the place where after he was born, friends and family very carefully placed all of the baby stuff from throughout the house into his room and shut the door – just incase something went wrong and it would upset me to see it.
Home where we know we can keep a close eye on him and even when we can’t, family or nursing can.
Home, where our family can finally all be TOGETHER.
I remember when we came home with Averie, walking out the doors thinking “I can’t believe they’re letting me take her home.” Today, that feeling was still there – ten fold at least – though this time we have hours and hours of practice and training behind us to help. Both with a “normal” child and hands on with AJ specifically.
Yesterday afternoon we got a send off from the staff in the form of a song – AJ danced along, shaking his leg to the music, completely in awe of what was going on. And then when we finally headed down the halls and into the car, he stared and sat in complete confusion and amazement the whole stroller ride and car drive until he finally passed out about 15 miles from home.
We were able to get mostly set up at home. Most of our equipment was delivered to the hospital, the oxygen equipment arrived at the house on Tuesday, and the remainder showed up at the house as we did yesterday. He definitely comes with a lot of baggage!
Most importantly? Yesterday he smiled and played and cuddled. He got to lie on a blanket on the floor for the first time and play with toys he’s never seen before. He had his trach cares, meds and then he passed out and slept while all around him, boxes and bags were being unpacked for settling in to our new routines.
There’s bumps to work out along the way – one of our concentrators stopped working (it was replaced quickly), Liz and I were up fighting with his pulse ox machine (he’s fine, but it wasn’t picking up for a while). We do have nursing that will ultimately be at the house so we can rest. We don’t know how many hours or what times exactly, but we will find out more tomorrow. Until then, and even sometimes after then, we are it. We have to be awake and alert to respond to his alarms and trouble shoot them if needed, no matter the time of day. Because of this, don’t be surprised if we seem exhausted. Also – this kid comes with a lot of baggage. We might start to come with muscles too. 😉
One last point? We absolutely do enjoy sharing the love and joy that AJ brings us with our friends and family – but please remember that AJ is still incredibly susceptible to germs with that open airway of his. No matter how much we miss you, or how much you want to see us, please don’t come by if you are sick – even just a sniffle – or if you’ve even been around other people who have been sick. And be prepared to leave your shoes at the door and nearly bathe in hand sanitizers. As much as we love our teams out at the university — we really don’t want to go back to see them unless it’s for a scheduled appointment – and we would much prefer to keep AJ healthy.
I think that’s it for now. Though really, I think that’s plenty. We are so, incredibly thankful for every good thought, prayer, nurse, Doctor, therapist and surgeon. And a bunch of other people who I’m sure I’ve accidentally left out. It’s an incredibly amazing feeling to be home.
And if you all have any room left on your prayer lists? We can definitely use prayers for staying home, and prayers to help get us through these next few weeks until things are squared away and stable with nursing hours.
