1.21.22 Trach Floor 86

Ed’s Post

Another week down. Rosa and I have both said that this is starting to feel normal, so I decided to do some math 🤔. Turns out we have been here (including this summer’s stays) one week shy of 6 months, 25 weeks. No wonder this feels normal. I usually try my best not to look too far ahead or to dwell in the past. Rosa even bought me a shirt that says “Stay present in today”. Honestly, that mentality has really helped me through the years with Aimee, because we just never know what tomorrow is going to bring. This is true for all of us, tomorrow is not promised, but somehow with Aimee this seems to stare me in the face more often than not. 

I say all of this, but I have to admit looking into the future scares me 😟. It scares me to consider the day that I have to look at Caleb and Elliot to tell them that we have to take Aimee back to the hospital and they ask “how long?”😭 What a crushing blow that is going to be for them and us. After we got home this summer, we had to take Aimee to get a blood draw and we even took them with us. They started to panic thinking that it was going to turn into a stay at the hospital. Who could blame them? When we left the house on October 2nd, we thought it might be a few days, that is now 112! What we thought may not even be an overnight stay, turned into 42 days this summer 😔. Louisa recites “Daddy hospital, Daddy help Aimee, Mommy home?” But how do we better manage this situation? 

I was discussing discharge again with the Care Coordinator today and one of the things they offer/ require before you can go home is that we are “in charge” of Aimee’s care for 24 hours straight. Her comment was, “I don’t think there is a single person in this hospital that thinks you guys need to do this.” The thought that went through me head was if they had to take care of Aimee without us, she would never leave, ever. To be fair this requirement is usually for the parents that are not here all the time 💁‍♂️. It struck me because of course we can take care of Aimee for “24 hours” 🙄.  That being said, we need to be here with her and we need to be home with the other kids too. I just don’t see any other way to do it. 

We did not make any progress today with scheduling for discharge, but should be able to early next week. Aimee didn’t make any progress today either, but also didn’t need any additional oxygen. We did have a first this morning, at about 4:30am, she managed to clog her Trach completely to the point that the Vent was unable to get any pressure in and Aimee wasn’t breathing. The machine alarmed quickly and I was able to clear the Trach and all was good. Just a little bit of excitement 😮‍💨.