Monday, June 29, 2009

Down Day

I was so anticipating a better flowing day. I guess that's what I get when I assume, LOL. My hope was that the consults that were ordered for Danny's specialist would have happened in some part of today.
We were able to get GI to stop by...and the thought of the nasty diarrhea is it's due to the antibiotics (which I already knew) as it started just after we started ALL of them. The doctor did state you can get many false negatives for C Diff and with the length of his diarrhea he ordered to start the treatment just in case. Which could be causing discomfort and cramping not to mention a red butt. This could be one reason for the spastic reaction (seizure like activity), thanks Dr Miranda.
Urology stopped by between his surgeries to just check in on lil man and voice his opinion with the kidney stone/pain issues which we both feel wouldn't be causing these episodes either, but his is thinking about ordering a Xray, to ward off all evil, and see if the 4mm stone Danny has started to drop. Which is painful but wouldn't be as intermittent as these episodes have been. I'm glad he is willing to "prove" this option out though, thanks Dr. D. I'm amazed at how the powers at be like to pass the buck but don't want to help find the pieces of the puzzle so it always a nice change of pace when there is a team player around.
But that was about it from my list of 7 specialist that I had thought I would have seen today. Palliative Care stopped in the morning and we paged them in the afternoon but they didn't reply or stop back, UGH! I saw Rehab last night and he was going to go over the CT scan that was done yesterday and the MRI disk that from when he had it done about a month ago, Rehab also must have been busy as he didn't show up today either. I was told the hospitalist put orders in for ENT, Dietitian, and PT but they to did not show up. I still haven't been able to talk to Danny's Pulm doctor either. So the key players in this admission I still haven't been able to talk to see what they think and put a game plan in place, SO FRUSTRATING! I'm trying to figure how much more serious do you have to get then being ambulance over cuz you're not breathing do we need to be before we can talk to our doctors that really KNOW Danny. Guess there's Priorities that I'm unaware of.
Danny had another lil episode, again while he was sleeping, of apnea brady and sat drop.....this time we were able to get him to snap out of it on his own, but obviously it shows that something still isn't right. Again prioritizing here, right? I am waiting to hear from the hospitalist on tonight as the nurse, RT and myself are NOT happy with his heart rate at 130 at sleep and his sats with the bipap and o's dipping at 84 . I think it's going to be a LONG NIGHT!!! Dr Kasper called this evening after his last "episode" and he isn't impressed either with the lack of communication & game plan.
They are in now trying to deep suction and then their switching him back to the hospital bipap as it has a better flow, I guess, then our home model. I was hoping for a better night seeing our day didn't go too hot. Hopefully the hospital bipap works....looks like we might be taking a couple steps back, but we all know Danny likes to do things in HIS time so..........who knows!
I'm doing ok, I know alot of you are very concerned about me and my recent DX ontop of all of the Danny stuff right now, but really I'm OK. I was prepared for the dx of MS so it really wasn't any BIG surprise to me. It's going to be an adjustment in my lifestyle once again, but if you know me at all.....I'm not MS, I just have it. I've learned from our journey's that you need to go with the flow, don't get me wrong I have and will continue to have my days, but for the most part what good would it do me or my family if I decided disconnect and be depressed all the time. Would that change things, no......I want to enjoy my life, even with the hand I was dealt, it's my hand and I'm play the cards the best way I know how. I have a family that needs me and I will be there for them to the best of my ability forever and always. I will be starting my treatments once all of this commotion slows down with lil man, he IS my priority right now. I am having a new symptom the last couple right leg feels as if it's in warm water all the time, warm and tingly. It doesn't hurt just a very weird feeling.
Cross your fingers for a more low key evening. Good night ~ and thanks for checking in on us.

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