Today was definatley one of the better days we have had lately! They left the pressure support on the ventilator at the higher setting as recommend by pulmonology and she keep her saturations up all night/morning. Her new trach came today and it seems to be alot more comfortable for her. It doesnt pull as much on her neck and when we sit her up she doesnt cough as much. Since this trach is uncuffed she again as a leak around it, so that air can pass around the trach, which means, can hear her (kinda) !!! She sounds very squeaky and when shes asleep she sounds like she is snoring loudly ~ like daddy ;) . Its hard not being able to hear her babble, laugh, or cry, so we will take all the squeaks we can get! Our meeting with the Dr's went well, we feel that now have a plan in place, if all goes well with Elizabeth. For now they will continue to try and wean her ventilator settings, but they also realize we cant stay in a hospital forever going up and down on vent settings, when really that can be done at home as well. We know we will have to have nursing care in our home, and if the only problem she is having is needing more/less pressure or O2 that is something that could be managed at home. They want her to be "better" from the infection that she has now, so she will finish her antibiotics. We are planning for another meeting on Monday to determine if she is doing well enough to transition her to a home ventilator, if that happens she will need to be on it for a few days to make sure she is stable on it and then we will have to do 72 hours of rooming in with her. Where we provide all of her care to ensure we are ready to go home. When she is released we will be transported back home by ambulance. So although the idea of HOME has been put on the table we are trying hard not to get too exicted, things change daily around here with Elizabeth. The thought of going home makes me happy and beyond anxious, not knowing how getting back in the routine of being home, working and caring for Elizabeth is going to go. But we will manage.
Not sure if I ever explained the sleeping arrangements here or not, but one of us can stay in the room at night with Elizabeth. Which means the other has to get a sleep room - which requires you be on a list and they assign them daily at 9pm based on distance from home and severity of your childs condition. You have the room from 9pm-9am for sleep/showers. If you dont get a sleep room then you can either sleep on a chair in the family lounge or get a hotel room somewhere in Nashville. Luckily we have been able to get a room most nights, an the few we didnt we had family staying so we were able to go to a hotel with them. But 3 weeks ago we got put on the waiting list for a Ronald Mcdonald room, and have been calling them daily to ensure we were still on the list, today we also got on the list for a room with Hospital Hospitiality House (sorta like Roncald Mcdonald). And today we got the call about a Ronald Mcdonald room and we got offered a room through the Hospital Hospitality House. We took the room through Hospitality House for different reasons, but we are very thankful to not have to wait till 9pm daily to find out if got a sleep room.
Hoping we are on the right track again :)
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