This has been a tough week (or two). There is no progress on Kate’s position on the list. Still at #3, the same spot we were at at the end of week 1 of our stay. We’ve been in the hospital for over 70 days and in many respects, it feels like we are fighting the exact same battles we were on day 1.
Our biggest problem right now is that the hospital policies are such that Kate is not allowed to sleep. There is absolutely no respect for her need to sleep. Overnight she is getting woken up around 4am for an assessment including blood pressure. This wakes her up 100% of the time and she never gets fully back to sleep after this. This leads to an exhausted toddler and exhausted parents. She isn’t able to play or explore due to being too sleepy and it’s sad.
This weekend we are trying to regress her back into two naps from her current 1. This seems to be helping a bit but it means that Kate’s rehab schedule needs to change, Audrey’s schedule needs to change and Dave’s work schedule needs to be changed. The worst part is that it feels like no one really cares about Kate’s well being. She’s getting good cardiac care but as long as she’s medically stable, the hospital really doesn’t care about anything else.
This week we tried to get a group of people together to see what could be done to help with things. This included our Primary Physician, the manager of the unit we are in, our social worker and someone from the hospital’s risk team. The meeting was scheduled around the availability of the risk team. Unfortunately the risk team didn’t bother showing up and didn’t even give an excuse for not showing. It probably wouldn’t have mattered as ultimately the hospital’s first priority above everything is limiting legal liability. This was clear from the meeting and that goal comes before patient care in all cases.
It’s sad walking around the floor. There are very few kids here who have a parent with them on a regular basis. The kids without a family member present are zombies. Most are propped up in their cribs pointing at the TV. If they are lucky, they may get an hour of a therapy (music, occupational, physical, etc) during the day. Some of the good nurses will go in occasionally and interact with the kids on a non-medical basis but this is the exception rather than the norm. We are extremely lucky that Audrey can be with Kate during the day.
I don’t want this all to be a sad rant though. There were some cute moments this week. On Thursday we carved a pumpkin with our awesome OT provider Nancy! She’s been helping Kate work on sensory issues (Kate doesn’t like squishy things for example). It was cute seeing Kate interact with a pumpkin, even though she wasn’t super thrilled about it. We also dressed up and went trick-or-treating in the hall. We stopped by the nurse’s stations and the nurses gave Kate little toys (that we provided). It was cute. There’s another long-term kid on the floor who is waiting for a heart. He’s a bit older but he and Kate exchanged some toys for Halloween. It was cute.
Thanks to everyone who is thinking of us. This is a very strange, sad, lonely time and it’s really tough.
It probably wouldn’t have mattered as ultimately the hospital’s first priority above everything is limiting legal liability. This was clear from the meeting and that goal comes before patient care in all cases.
This is the saddest thing ever. Keep fighting for little Kate.