I'm getting super impatient. Trying not to show it at all, and I haven't said anything to Spencer about it... But I'm just going CRAZY!!!! I think some of it this time since the move to IMCU is his nurse. She tends to take forever in the room and takes her time... Not exactly sure why she seems so slow. She's pretty nice - but she also does EVERYTHING for Spencer when he should be trying to become a little bit more independent. I spoke up today when she was brushing his teeth and said that it would probably be a good idea if he did it himself. I hope that maybe in the next couple of days he'll get a new nurse. His night nurse is GREAT - we know her from the CF unit =)
I'm also getting kind of frustrated with the timing of everything. I come up to the hospital around 12 or so and he's sleeping. He tells me to give him 30 more minutes so I do... I come back, and he has to do his treatment. This takes 20-30 minutes so I just get on my computer and chat with the RTs. Then his nurse comes in to give him his meds. It took her 20 minutes to do this; how can it take 20 minutes to give meds and draw blood? lol After that they give him a bed bath which so far we're going on 10 minutes and they are working pretty slowly. They are now trying to get all of the stickyness off... I can tell this is going to take awhile!!!!! >.< They are then going to change his trach dressing which is going to cause him some pain which will probably get a little unbearable so he'll want some pain meds. They won't give him fentanyl so he'll get oxycodone which puts him to sleep for about 2.5 to 3 hours. We are still waiting for physical therapy to come in. Word is that they want to get up and walk with him, which is great. But he's going to be on pain meds and won't be worth much for his PT session... and that's the most important part.
He gets REALLY tired from PT because they have him walk and then sit up for about an hour. So he'll sleep for about an hour after PT and then it's treatment time again, medication time. etc. When do I get time for him >.< They have visiting hours here but thankfully I have gotten to stay in his room during the hours because he has an amazing night nurse. But that's like the only time he's awake.
I think we need to talk with his care team about how we should do things. I feel like they are doing everything backwards and not very efficiently. The doctors on MICU felt that it was very important for him to stay awake during the day so he could get off the vent and sleep at night. I guess that has went out the window because they don't seem to be caring if he's sleeping. They never wake him up.
I am also REALLY frustrated with the doctors. Communication is not happening. I hope to fix that tomorrow. We have a meeting with the nurse coordinator and so I hope to get his CF team in here to discuss a ton of things. I thought we were supposed to be weeing his vent settings down but they haven't been touched since the surgery for the trach.... I'm just so confused. I feel like everyone is on a different page. -sigh-
On a positive note.... Spencer can swallow. They are letting him drink a little bit and eat soft foods. I'm pretty sure he's ecstatic about this!! I haven't really gotten to talk to him about anything since staff has been in here constantly...
day 42 - my patience is wearing thin.... my frustrations are getting high... I need to see some improvement ... like.... MAJOR improvement!!!
And PS.... yes they are still giving him the bed bath/changing trach dressing... We're currently going on 20 minutes and no, they are not even half way done O.O