Hi friends, as I said in my post on "How are parents coping", I am starting this little thread just to update those of you who have been so kind to ask about how Marni is doing.
She has actually been sleeping for hours now. Last night she didn't get much sleep, from 3 to 6 am, so after the morning parade (you know the one....nurses with drugs, housekeeping, doctors, nurses aides taking vitals), she got her "morfeen" as she spelled it in a text to my mother the other night, and then fell asleep. I was on the bed next to her and was afraid to move for hours because I didn't want to wake her up.
Our hospital doesn't have beds for parents, but rather those chairs that slide out into horribly uncomfortable beds. There's also a bench on the side of the room where I've slept before when we've been here, but it's just as uncomfortable. So, at Marni's request, I've been sleeping with her. For those of you who have been there, you know the balancing act that takes to sleep comfortably in a single bed . Still it was better than the chair bed.
We arrived here Friday (Today is Monday) and started her on morphine right away. It helped SO much, and she was acting so "normal" that for a few moments I actually thought I might have made a mistake in admitting her. But of course, my decision was justified when the pain came back and so did the quick trips to the bathroom.
In speaking with our doctor, the plan as of Friday night was to put her to sleep and deploy a dummy camera pill, and while she was asleep, start an IV. She never used to be afraid of the IV, but lately, it's so hard to find good veins and it hurts her so much for them to stick her and then dig around until they get something, just to have it clot, or blow soon after. Now she's very afraid, and I hate putting her through that. So, I asked for it to be started under anesthesia when they deployed the dummy cam.
Well, in this world famous Texas Medical Center, our hospital's dummy cams had expired in december, and they wouldn't let them be used. The real ones are up to date, but our doc won't do the real one until the dummy proves that it's not going to get stuck. None of our previous tests have every shown strictures, but there is one line in the surgeon's report from almost three years ago when her coloncopy resulted in a perforation and emergency surgery to repair it, where the surgeon wrote that he saw strictures. So, despite all of the negative tests since then, they have to go on the possibility that there are some present.
So.....until they find a dummy cam, no pill cam. And, that meant having to start the IV without sedation/anesthesia because they won't do that in this hospital. So, our doc and I agreed that a picc line would be placed because that would be done with anesthesia....except that it was Saturday now, and this hospital doesn't have anyone here on weekends who can place piccs. Amazing, right? This is a huge hospital system in Houston and we are in the one in the medical center, which is also huge. And, of course, it's open 24/7 for every type of need. So, why they don't have anyone here who can place piccs on the weekend is beyond me, and it also ticked off our doc. So he called the head of the hospital and asked him to call in the "on call" team to do it. They did, but they were groucing about it. Why in the world are we here when all she needs is a peripheral IV? I tried to explain to them that that was easier said than done, but I loved the way they tried to explain back to me all the ways to make an IV more comfortable to start...as if we hadn't already tried all of those BEFORE we'd try such an invasive procedure as a picc.
She was receiving her steroid foam enemas, her pain meds, her antibiotics, etc and was really doing better faster than I expected. What a huge relief to see her perk up and be her old self, and she actually spent most of Sunday with no pain at all.
Then, last night at 1am, the nurse told me her stool labs were back and she had C Diff. I don't know why, but I was stunned. I'd like to hear from all of you if and how often your kids have had it because Marni has never gotten it. So, at first I was freaked out, but then, I started thinking that it was probably just a matter of time anyway. Then, as a couple of you know already, I started wondering (and driving myself a little crazy) whether all the treatment that was given to her over the past month for a flare was for nothing because it was C diff the whole time. I mean, wouldn't it have been so much easier to have checked her stool at the beginning and avoid all these delightful enemas?
But, when her doc came by this morning, I talked to him about it, and he said he felt that it was probably the treatment that tipped the scales and allowed the c diff to flourish and he still believed that it was Crohn's inflammation that started all the problems.
So, for now, we've stopped the steroids both IV and Rectal and are on Vanco for the C diff. In a couple of days, if and when her stool tests are negative, we'll start the steroids back up again.
And, until then, we live in the time vacuum known as the hospital. I had a business meeting this morning with a colleague. I knew she was going to be in the hospital, but I scheduled it anyway thinking my husband could stay here with her while I went. Then, of course, I totally forgot all about it until I got a phone message from him wondering where I was. I felt SO bad and was very embarrassed that I had just plain not shown up. I'm going to see patients in my own practice tomorrow and Wednesday, and then I'll be free again til next week which is spring break, but I sure hope she gets to go home by the weekend.
Please write/post and let me know what you've dealt with concerning C Diff and figuring out which came first the chicken or the egg!
Thanks for all your support.
Stacey
She has actually been sleeping for hours now. Last night she didn't get much sleep, from 3 to 6 am, so after the morning parade (you know the one....nurses with drugs, housekeeping, doctors, nurses aides taking vitals), she got her "morfeen" as she spelled it in a text to my mother the other night, and then fell asleep. I was on the bed next to her and was afraid to move for hours because I didn't want to wake her up.
Our hospital doesn't have beds for parents, but rather those chairs that slide out into horribly uncomfortable beds. There's also a bench on the side of the room where I've slept before when we've been here, but it's just as uncomfortable. So, at Marni's request, I've been sleeping with her. For those of you who have been there, you know the balancing act that takes to sleep comfortably in a single bed . Still it was better than the chair bed.
We arrived here Friday (Today is Monday) and started her on morphine right away. It helped SO much, and she was acting so "normal" that for a few moments I actually thought I might have made a mistake in admitting her. But of course, my decision was justified when the pain came back and so did the quick trips to the bathroom.
In speaking with our doctor, the plan as of Friday night was to put her to sleep and deploy a dummy camera pill, and while she was asleep, start an IV. She never used to be afraid of the IV, but lately, it's so hard to find good veins and it hurts her so much for them to stick her and then dig around until they get something, just to have it clot, or blow soon after. Now she's very afraid, and I hate putting her through that. So, I asked for it to be started under anesthesia when they deployed the dummy cam.
Well, in this world famous Texas Medical Center, our hospital's dummy cams had expired in december, and they wouldn't let them be used. The real ones are up to date, but our doc won't do the real one until the dummy proves that it's not going to get stuck. None of our previous tests have every shown strictures, but there is one line in the surgeon's report from almost three years ago when her coloncopy resulted in a perforation and emergency surgery to repair it, where the surgeon wrote that he saw strictures. So, despite all of the negative tests since then, they have to go on the possibility that there are some present.
So.....until they find a dummy cam, no pill cam. And, that meant having to start the IV without sedation/anesthesia because they won't do that in this hospital. So, our doc and I agreed that a picc line would be placed because that would be done with anesthesia....except that it was Saturday now, and this hospital doesn't have anyone here on weekends who can place piccs. Amazing, right? This is a huge hospital system in Houston and we are in the one in the medical center, which is also huge. And, of course, it's open 24/7 for every type of need. So, why they don't have anyone here who can place piccs on the weekend is beyond me, and it also ticked off our doc. So he called the head of the hospital and asked him to call in the "on call" team to do it. They did, but they were groucing about it. Why in the world are we here when all she needs is a peripheral IV? I tried to explain to them that that was easier said than done, but I loved the way they tried to explain back to me all the ways to make an IV more comfortable to start...as if we hadn't already tried all of those BEFORE we'd try such an invasive procedure as a picc.
She was receiving her steroid foam enemas, her pain meds, her antibiotics, etc and was really doing better faster than I expected. What a huge relief to see her perk up and be her old self, and she actually spent most of Sunday with no pain at all.
Then, last night at 1am, the nurse told me her stool labs were back and she had C Diff. I don't know why, but I was stunned. I'd like to hear from all of you if and how often your kids have had it because Marni has never gotten it. So, at first I was freaked out, but then, I started thinking that it was probably just a matter of time anyway. Then, as a couple of you know already, I started wondering (and driving myself a little crazy) whether all the treatment that was given to her over the past month for a flare was for nothing because it was C diff the whole time. I mean, wouldn't it have been so much easier to have checked her stool at the beginning and avoid all these delightful enemas?
But, when her doc came by this morning, I talked to him about it, and he said he felt that it was probably the treatment that tipped the scales and allowed the c diff to flourish and he still believed that it was Crohn's inflammation that started all the problems.
So, for now, we've stopped the steroids both IV and Rectal and are on Vanco for the C diff. In a couple of days, if and when her stool tests are negative, we'll start the steroids back up again.
And, until then, we live in the time vacuum known as the hospital. I had a business meeting this morning with a colleague. I knew she was going to be in the hospital, but I scheduled it anyway thinking my husband could stay here with her while I went. Then, of course, I totally forgot all about it until I got a phone message from him wondering where I was. I felt SO bad and was very embarrassed that I had just plain not shown up. I'm going to see patients in my own practice tomorrow and Wednesday, and then I'll be free again til next week which is spring break, but I sure hope she gets to go home by the weekend.
Please write/post and let me know what you've dealt with concerning C Diff and figuring out which came first the chicken or the egg!
Thanks for all your support.
Stacey