A Pretty Difficult Day

Bailey had a pretty yucky day. It started out good (although she was up 2 lbs this a.m. - probably due to IV fluids) - she woke up hungry and ate her breakfast. It just didn't stay down too long. Then the vomiting caused lots of pain in her sides - probably because of all the fluid pulling, tugging and smashing everything - so they gave her morphine for her pain. Between that and a different nausea medication, she was pretty well out of it all day. She opened her eyes and sat up only to vomit. So, so hard to see her sick. One reason the last several months have been even tolerable us that she has felt pretty good besides the discomfort of all the extra fluid. But to see her so miserable, weak and pretty much out of it - completely not herself - is so hard and stressful on me. She would wake up enough to ask me questions throughout the day, "Mom, why do I feel this way?" "Mom, I don't want morphine anymore - I don't like this." "Why am I so weak?" Just made me want to cry. Well, in fact, I did have a small break down this morning. It was funny . . . I just got showered and dressed and could feel it welling up inside. I decided I needed to talk to Debbie. Not knowing where she was in the hospital, I paged her. I was just walking out of Bailey's room when I paged her because Bailey was still sleeping and didn't really want her to see or hear me cry, and I say, "Hi Debbie. Where are you?" And she says, "I'm standing right here looking at you." And I look up to see her standing about 10 feet away. Hours later, it was pretty funny, but at the time, I just walked up to her and fell apart. She and Dr. D took me aside and had a very nice conversation just basically reiterating everything and assuring me that this wasn't happening because her heart was getting worse. They made me feel better, but I knew I would be in trouble when I walked back in Bailey's room. She was instantly be afraid of why I was crying. She's been around me enough to see my minor breakdowns and wasn't too surprised to see this one.

The liver doctor came to see Bailey today and they did an ultrasound of her liver. And the thyroid doctor came to check that out. Haven't heard any results of anything really, so don't think they found much there. But Dr. D and Dr. T have consulted (and the liver doctor also) and they decided to drain some of the fluid off of Bailey's belly. So probably tomorrow afternoon they'll get her in. They're not going to just draw it out with a syringe, they are hooking her up to a line that will be controlled by a pump that will draw the fluid out over a 24 or 48 hour period. This will hopefully avoid any issues with dropping blood pressure. They're also doing a lung biopsy while they're in there and giving her a central line (an I.V. that can potentially stay in for weeks/months - maybe she can avoid all these I.V. sticks). We might have to spend the night in ICU - depending on how well things go. But hopefully she will feel much, much better afterwards. Procedures all have their risks, so Bailey and I are both a little nervous, but looking forward to feeling better.

Well, unfortunately, I've developed a blind spot in my left eye and now squigglies which only means a migraine coming on. I was so looking forward to a good night's sleep tonight. Oh well. Ugh!! I don't want a migraine. At leave I have some medicine with me. I'd better go take it.

Have a great day, everybody, and I'll keep you posted.

Angie