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Monday Update: 10/17/05

Blessing for the day:
Matt got a letter board from his speech therapist today. It has the alphabet on it so he can spell out words and communicate with us better. What a HUGE asset this has proved to be already!! Of course, I being the spelling wizard that I am struggled with the first thing he tried to tell me. It went like this…DR (pause) IN (pause) K. I was baffled….Dr in? Dr Ink? Dr in, K? Or…DRINK!?!?! Jeez, how stupid am I!? I was so confused! HA! Once we finally got it figured out, I was overjoyed! I got some water on a soft sponge for him to suck off and swallow. He did really well with that! Our first real communication (besides yes/no questions) in weeks, it felt so good.

I have also learned from this letter board that his biggest frustration right now is lack of sleep. He told me that he has been having bad dreams. That right there just about broke my heart. There’s nothing I can do to help that. I always hated leaving him at night, and I worried that he wouldn’t sleep well, but I never imagined he was having bad dreams. Apparently he has had nights where he’s pushed the call light and waited for a long time before a nurse came in to check on him. I think his anxiety about that has been leading to these bad dreams. Which leads me to the next subject…the crap has hit the fan, so to speak, with the lack of quality care he is receiving from some of the nursing staff.

There have been several things that have really worried me; missed medication times, giving him the wrong food in his feeding tube, not responding to his call light…etc. Well, I had been telling myself that it didn’t really matter because we were leaving soon, and I’d just address it after the fact in a well-worded letter. However, we found out today that Younker doesn’t want Matt to come there just yet. Apparently, they want him to increase his ‘strength and endurance’. I was so stunned when the Younker nurse called me that I didn’t really know what to say. Hasn’t he already proved his strength and endurance, by participating in 3+ hours of therapy each day here? I didn’t know what to say. She is going to send for his therapy notes again this Friday and review them. She thinks he’ll be ready in another week, or two at the most. I’m guessing they want to see the strides he makes from week to week. We were all quite disappointed, to say the least. So, I addressed all my concerns regarding the nursing care with the rehab coordinator. She was equally concerned and went straight to administration….who in turn sent the nursing director to me to talk. We discussed all my concerns and she documented the incidents that upset us the most. She tried to reassure me that she would speak to the nurses in question and strive to provide us the level of care he ‘should’ be receiving. So…we’ll just have to see how it goes. I hate confrontation, and don’t like to have conflict…but at this point, I’ll unleash the B in me if I have to, in order to get Matt the care he needs.

So, we’ve had a bummer of a day…and to top it all off I have come down with a TERRIBLE cold. I felt it coming on Friday and by Saturday was really dragging. Unfortunately, I think I may be passing it on to Matt who is running a slight temp today. He was tired and feverish most of the day, poor thing…and yet he did really well in his therapy. Even though he’s been tired and feeling crappy, he’s been trying very hard to do the tasks asked of him. He is so motivated and such a hard worker. Please continue to pray for peaceful nights for Matt. He needs good sleep to perform his best during the day. Please pray for that peace for him. I will keep you all posted on his progress and when he is ready for Younker…or when they’re ready for HIM I should say!!


Anonymous said…
I think of the two of you alot and pray for the best outcome possible! Will keep the both of you in my prays. Hang in there - remember the best is yet to come.

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