8 hours later, we were leaving Lima Memorial ER. They had done blood work, chest x-ray, and urine and said she had pedal edema. (even though the ER dr walked into the room, saying she didn't have any pitting) {pedal edema is excessive fluid in the lower extremities (feet, lower legs)} We left very frustrated and tired.
When the rest of the world was waking up, Nellie was making more calls to her drs for help. Dr. Jemsek couldn't prescribe Lasix without physically seeing her, so we had to have help locally. She'd left messages at places and didn't hear back until after business hours on Friday.
So 5pm came, and we were heading back out the door to ER. Only this time to St. Rita's Medical Center. We chose SRMC because Nellie's cardiologist is with them. He wasn't in all weekend, but they would have her cardiology records available, etc.
That night in ER we waited a long time! we were both exhausted from having done the same thing the night before. I had "splurged" and taken a 2 hour nap, even though a cousin from out of town was coming. (hi Lyds :) I knew why I'd done it, or God had directed it, when i woke up to the words "we're going back to ER" hit my ears.
The dr's were very concerned with Nellie's vital signs. As Dr. Voit said, "you can't fake that". Around 4am she was admitted for more tests and observation. "funniest" thing is i totally don't, not at all, remember going from the ER room to her patient room on 4A. I was so tired i don't remember it.
here is a shot of her vitals. this wasn't at the highest, but it give you a clue what we were dealing with.
We were going to leave Nellie alone for the night, because she would be fine and we needed our sleep, even though it was going against every grain of my being. I am suddenly feeling very protective of her for some reason. We didn't end up leaving her because Dr. Tuma, the admitting hospital doc, came into the room and wanted her history, pretty much from time of birth. Then he preceded to say she couldn't have this wrong with her, that's not possible, how can you take that many pills, thats not possible, and on and on he went. It sent me into the largest anxiety attach in my history, and sent Nellie into tears. He didn't believe her Ehlors Danlos Syndrome until he saw the super stretchy skin, and the extremely hyper mobile joints. (she could be a contortionist if she wanted to) Later he did come back in and take back one of the accusations he had made, but we were both upset. Needless to say, i stayed the night with her.
It was 5 til she was settled in her room, and we both clunked out!
We were in the hospital for 4 days and nights. I spent every night with her because i could sleep better in the chair up there than mom could.
Saturday was very dreary.
Neidy brought balloons Saturday so it helped cheer up the room since it was rainy outside.
Sunday was 16 years since Papa died and we had a to take a picture to remember it by.
We were home by 8:15pm Tuesday night. I got Nellie home and settled in and then ran back to the pharmacy quickly to drop off scripts. She needs meds the next morning so it wasn't something that could wait til the next morning. We crashed into our own beds that night. It was good, for me, to get a whole nights sleep in my own bed! The hospital chair wasn't the worst thing in the world, but certainly not very comfortable.
The rest of that week we spent going to follow up dr visits. In between times, we did our best to catch up on good sleep. Nellie didn't want to leave the hospital because the bed was so comfortable. She could easily sleep sitting up, and prop her knees up, and all that good stuff. :)
I should probably try to explain what was wrong with her. :) Because of her POTS, she was on 2 different blood pressure meds. Between those and her daily fluids, it was too much. So her body went a bit crazy. Her cardiologist took her off of the 2 and put her on a different one. He said it was a good thing that all this happened and that she was in there. The fluids are helping her heart work, so she doesn't need the meds. Being able to go off of meds is always a good thing! :)
The symptoms she was having was pointing to Congestive Heart Failure, but all tests came back negative, so that is a big relief. We do have a lot of heart problems on both sides of the family, so it wouldn't be out of the realm of a possibility.
By now life has leveled back out, and things are mostly back to her normal. Because of her being so sick, her Dr. kept her off of her IV's and extra 2 weeks. Now she has to make all that up quick before their next appointment. So she is doing IV's every other day til they fly, which is a heavy dosing! She normally does 3 times a week, and has weekends off. She has been herxing a fair amount, but that is good. Just tough to deal with. She feels really sick, and is unable to do some things sometimes. So it takes more care from me.
Today she was having (worse than normal) vision problems, nausea, dizziness, and pretty bad narcolepsy. It made some things pretty entertaining. We were talking, she said "hold on", and fell asleep on me just like that. Thankfully i only had to say her name and she woke up again.
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