sunflowery's Diaryland Diary

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Still Waiting for Info on Supe

It has been a frustrating morning. First, I called our primary clinic to see if I could talk to the doctor who called Supe on Friday to tell him the Neuro wanted to hospitalize him. She wasn't in yet, but there was a note that said Supe should accompany me on my trip to the doctor tomorrow to talk to our family doc. Whatever. So then I called Dr. Scott's nurse to see if I could get the 411 on what's going on. She was confused and clueless! She said she would call me back, but never did...so I called her back 2 hours later. It turns out that our primary clinic was contacted by Dr. Scott who thought, based on Supe's numbers and levels, that he should be hospitalized. So, they had a doctor from there call us as our doc was not in at that time. Supe whined and complained about having to sit in the hospital all weekend waiting for the labs to open. So that doc called Supe's former hemologist and gave him the info. Based on Supe's history and current numbers, the hemo decided it would be OK for Supe to stay home over the weekend....but he should come in to see him sometime soo. So, here we are...both going to see our family doc tomorrow.

I am waiting for a call from Dr. Scott though, who returns his calls in the afternoon, to see what it was that was whigging him out about Supe's levels.

So, that's where we are at. Waiting, waiting and more waiting. It's my lunchtime now, so off I go. ------------------------------------- A Year Ago Today: March 22, 2003:"Q" is for Questions and Quandry and Quizical

Today's entry is brought to you by the letter "Q" for Questions about my husband's health.

I am glad for this diary and the ability to chronical my husband's hospital stay. It is a good outlet for me as well.

I got to the hospital at 9 this morning. He had eaten breakfast and was feeling better although still not liking the oxygen mask on his face or the fact he was to stay on bedrest

He now has a team of doctors working on him. It's hard to keep them all straight. But a woman doctor...Dr. Whitley...came in and said they want to keep him on the O2 mask because his CO2 levels go up when he is not on it. She said they will be doing some tests to gage the strength of his lung muscles and to see if he has the strength to breath on his own. She was very nice...explained everything clearly and succinctly. At this point, they have ruled out any extra illnesses or disorders. They are pretty sure this is all related to his MD. His muscles are not strong enough to work his lungs correctly so he can't push out the CO2 which makes his body realize there is not enough O2 so it produces more red blood cells to compensate and carry O2 through the body. But still, enough O2 isn't getting to the kidneys so they are functioning and fluids build up in his body. He has a cathiter and the fluids are really coming off now.

Later, his pulmonologist, Dr. Yunis came in and said they will be doing some pulmonary tests, but that what they are afraid of is that the muscular dystrophy has degenerated the muscles around his lungs so that he cannot take in enough O2 or push out the CO2 on his own. After the tests, they will know more, but he fears Sweet Baboo may have to have a trache and be put on a ventilator. If That's the case, there's no going back...the machine would be doing the breathing for him. THAT is not what we thought we would hear. It was quite a shock and SB did not like it at all. We had a little cry together. We want his muscles to be strong and healthy enough for him to be able to breathe on his own.

Our families have rallied around us. They have been a constant source of strength and encouragement. Also, the nurses on the ICU have been amazing! Special notes of thanks go out to all my friends (and my 2 sister's in law and 1 neice in law) who are nurses. Your jobs are so important and so unappreciated. Well, I tell you now...you ARE loved and appreciated.

I am going back to the hospital now...I will be there late tonight and all day tomorrow before I have my gallbladder surgery on Monday. My sister in laws and Mom will be here to make sure I am OK and SB's family will be there with him to make sure he is OK until I can be there.

It looks like he will be in the ICU until at least Thursday...if not longer. If you come to visit, please be aware that he can't have any balloons or flowers in his room and he is allowed only 2 visitors at a time. Also, there are no visitors whatsoever allowed between the hours of 7am-8:30am, 3pm-4pm and 7pm-8pm. So, please plan your trip accordingly. Also, if you come during the week, the chances are good he will be undergoing tests, so it may be wiser to call the ICU to see if he is there. But also be aware that I have been appointed his spokesperson...no one can give out any personal or specific health information to you except me...so if you call the desk expecting to ask about anything other than if SB is there or not, they won't tell you.

Thanks for Reading!

2:03 p.m. - Monday, Mar. 22, 2004
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