- Joined
- Feb 23, 2014
- Messages
- 2,636
- Reason
- Lost a loved one
- Diagnosis
- 01/2014
- Country
- US
- State
- NC
- City
- Littleton
So much has gone on that I think I'm way behind in catching everyone up. Last weekend one son, his wife, three grands and two dogs visited. Friday night I had a nurse so all but Matt went out for a boat ride. 10 minutes out my DIL started having an anaphylactic reaction to something she drank and we had to rush back to the house and ended up calling an ambulance for her (after almost tossing her into my bed and stringing the nebulizer across Matt to her to start treatments on her). I picked her and my son up a couple of hours later.
On Saturday, while we were all out on the water and Matt was with the nurse, he had a nasty mucous plug. I found out when I got back to the dock and saw an ambulance in the driveway again. His nurse bagged him for 3 and a half hours (ambulance crew was out of their depth and the RT at the nearest hospital had to "think" about it before taking over). He cleared, but Xrays showed what looked like a large pneumonia, so we transferred to Duke (local hospital had no pulmonologist and Duke has the best transport around).
At Duke we started int he mICU because there were no beds in the pulmonary unit. After one doctor refused, we got another to do a bronchoscopy. They sucked a bunch of muck out and took fluids for culture, then moved us to the pulmonary floor. The next day the VA (right across the street) had a bed and they transferred us there for continuity of care, since Matt gets his long term care there.
We are now in the MICU at the Durham VA. Sometime last night he was switched from oral (tube) antibiotics to IV because the cultures done at Duke show a couple of nasty bugs. Now we wait a couple more days for the sensitivity tests to determine that we have the right antibiotic. They are talking about a pic line as he will need a longer course.
The has been exhausting, but the nursing agency that the VA pays for has sucked up the expense of sending nurses to relieve me in the hospital so that I can rest. I am SOOOOO fortunate.
Other progress that we've made: After three rounds of Ileus treated in hospitals since going on tube feeds I bought Liquid Hope myself, and it's fantastic. No more bloat, no more pain in his gut, no more diarrhea, and his bowels are moving on their own while laying down (we've had to suspend him in the sling for three months to even get liquid to squirt out of his backside). Yesterday he had 5 normal movements. His brother told him he was full of sh*$, and apparently he was right. The nutritionists are no on board and are working on getting insurance to cover it. The VA requires that we try another whole food version first, so we're pursuing both avenues.
The pulmonary folks are working on getting Matt a vest.
Endocrine is moving him back to the U500 insulin since he takes so very much (yeah!).
We are getting a prescription for Mucimist which is working very well in his nebulizer to thing the gunk.
And here's the coolest, even if short lived, thing:
Last night he had trouble breathing, so was bagged again for a few moments before he settled down. They did an EKG and his heart is fine and there was no muck in his chest, so they think maybe he had an anxiety attack. Shortly after, something shot down his right arm. He said it felt like a pressure cuff had been inflated. Right away, he was able to squeeze his left hand again. If we pick up the arm, he can wave the hand up and down. He can also move his left arm again. This is beyond weird, and I have no expectation that it will last long, but he was able to squeeze my hand again last night.
We are also able to leave his cuff down longer and he talks up a storm. Maybe having his lungs cleaned out is helping with that.
I've had a couple of breakdowns this past week, but they are very very short lived. It's like I just don't have the energy to cry, so after a moment it all drys up. I feel like a ping pong ball, but thee are so many blessings in all of this that I can only be grateful (when I'm not numb).
I've been told by several people that the first six months or so after being vented can be rough, but that if things settle down we may have more time. I still believe that that more time is coming, and the smile that lights up Matt's face more and more often now seems to validate that feeling.
Now, if only I could find an accessible motorhome to rent. One that has a lift and and a hospital bed in it. Wouldn't that be great? We could travel again. It's not going to happen, but a girl can dream.
Becky
Queen of the Merry Go Round
On Saturday, while we were all out on the water and Matt was with the nurse, he had a nasty mucous plug. I found out when I got back to the dock and saw an ambulance in the driveway again. His nurse bagged him for 3 and a half hours (ambulance crew was out of their depth and the RT at the nearest hospital had to "think" about it before taking over). He cleared, but Xrays showed what looked like a large pneumonia, so we transferred to Duke (local hospital had no pulmonologist and Duke has the best transport around).
At Duke we started int he mICU because there were no beds in the pulmonary unit. After one doctor refused, we got another to do a bronchoscopy. They sucked a bunch of muck out and took fluids for culture, then moved us to the pulmonary floor. The next day the VA (right across the street) had a bed and they transferred us there for continuity of care, since Matt gets his long term care there.
We are now in the MICU at the Durham VA. Sometime last night he was switched from oral (tube) antibiotics to IV because the cultures done at Duke show a couple of nasty bugs. Now we wait a couple more days for the sensitivity tests to determine that we have the right antibiotic. They are talking about a pic line as he will need a longer course.
The has been exhausting, but the nursing agency that the VA pays for has sucked up the expense of sending nurses to relieve me in the hospital so that I can rest. I am SOOOOO fortunate.
Other progress that we've made: After three rounds of Ileus treated in hospitals since going on tube feeds I bought Liquid Hope myself, and it's fantastic. No more bloat, no more pain in his gut, no more diarrhea, and his bowels are moving on their own while laying down (we've had to suspend him in the sling for three months to even get liquid to squirt out of his backside). Yesterday he had 5 normal movements. His brother told him he was full of sh*$, and apparently he was right. The nutritionists are no on board and are working on getting insurance to cover it. The VA requires that we try another whole food version first, so we're pursuing both avenues.
The pulmonary folks are working on getting Matt a vest.
Endocrine is moving him back to the U500 insulin since he takes so very much (yeah!).
We are getting a prescription for Mucimist which is working very well in his nebulizer to thing the gunk.
And here's the coolest, even if short lived, thing:
Last night he had trouble breathing, so was bagged again for a few moments before he settled down. They did an EKG and his heart is fine and there was no muck in his chest, so they think maybe he had an anxiety attack. Shortly after, something shot down his right arm. He said it felt like a pressure cuff had been inflated. Right away, he was able to squeeze his left hand again. If we pick up the arm, he can wave the hand up and down. He can also move his left arm again. This is beyond weird, and I have no expectation that it will last long, but he was able to squeeze my hand again last night.
We are also able to leave his cuff down longer and he talks up a storm. Maybe having his lungs cleaned out is helping with that.
I've had a couple of breakdowns this past week, but they are very very short lived. It's like I just don't have the energy to cry, so after a moment it all drys up. I feel like a ping pong ball, but thee are so many blessings in all of this that I can only be grateful (when I'm not numb).
I've been told by several people that the first six months or so after being vented can be rough, but that if things settle down we may have more time. I still believe that that more time is coming, and the smile that lights up Matt's face more and more often now seems to validate that feeling.
Now, if only I could find an accessible motorhome to rent. One that has a lift and and a hospital bed in it. Wouldn't that be great? We could travel again. It's not going to happen, but a girl can dream.
Becky
Queen of the Merry Go Round
