Lots of phone calls were made back and forth between the Vegas hospital and TCH. How do I know this? Because all conversations seem to take place at the nurses desk outside Hannah’s window! Unfortunately, I couldn’t make out details of what was being said, but it was definitely about the transfer. I’m hoping Thursday we get to transfer, but no one seems to give me any details.
Hannah had a rough day Tuesday. She is just so damn uncomfortable! There seems to be nothing I can do to comfort her, and that is so hard to admit, let alone watch.
She had a bedside swallow study. Hannah’s OT, Ashley (who I love!), brought a tray of food to see what Hannah could tolerate eating. I laughed because I saw the ice chips, ice cream, cheerios, applesauce, muffin, and a few other things, and I thought to myself “there is no way she is going to eat any of that!” Sure enough, she eventually sucked on the ice chips and enjoyed them. She reluctantly took the ice cream and applesauce by soon.
Then, we went to the bottle of apple juice. She would put it in her mouth and chew on the nipple, but apparently the chorea movements also affect her tongue, and she just does not have a useful suck reflex anymore. No wonder she does not like her paci, she can’t suck on it! This broke my heart. She is 99% bottle fed, and now she can’t suck on a bottle right now. Thank goodness we got her the Gtube! Otherwise, we would have ended up having to get one at this point.
She had PT later in the afternoon, and she tried so hard. Jay, our new PT, put her on her tummy to see how she would do with tummy time, and she just could not get the coordination and strength to push herself up. She wanted to so badly, as you can tell when he held her chest when she was trying to push up from the ground.
I’m angry that her body has become so thrashed because of all the sedatives. Shouldn’t the doctors have known that throwing that many sedatives to her while she was intubated would have some kind of addiction effect like this? Plus add in the chorea movements, and she just is miserable, absolutely miserable.
I’m looking forward to going to Vegas to get a new set of eyes on her. Even though both neurology and the PCU team have submitted their plan for Vegas to continue what we have been doing, I just need to get her out of here. I know that having her family around her, besides me, will be great for her, as I feel lost as to try and do things with her because there is just nothing she can do — can’t play with toys, can’t stay still enjoy for me to read to her, can’t watch TV for more than a few minutes. The worst thing is that she just does not like to cuddle that often anymore, so even that does not help as much as it used it.
Hopefully Wednesday will bring some better news…
Latest Comments