I had really hoped to do a better day to day account of what we were doing medicine wise and what she was eating/how she was doing, etc. because there isn’t a ton out there about this. But, it’s been so all consuming that I’ve not even been keeping good notes. Throughout this recover she’s been twirling her hair with one or both hands like crazy. Her hair is noticeably thinner and she’s constantly pulling out hair from the twirling.
Day Five – Sunday:
Today we decided to brave the heat for ice cream. Good idea and bad idea. It was hot hot hot and I don’t think being out in that made her feel very well. Up side was that she at HALF of a mini cherry fro-yo from Pinkberry. That’s a whopping 50 calories! But when she was done, she was done. And she cried most of the way home saying she was not comfortable.
Day Six – Monday:
Another rough night on the air mattress in her room together. She got up several times crying. And I really needed to get back to work after taking a week off. I ended up going in for a few hours in the morning and then coming home around lunchtime. I think tonight was the night that crying turned into her hysterically saying Mommy, Mommy, Mommy over and over again in her hurt little voice. Torture for me. She wants to be held, but is too uncomfortable to sit still and be held.
Day Seven – Tuesday:
The Mommy chant got louder last night and I called into work on this day. She wasn’t eating or drinking today and we hoped that meant the scabs were falling off. One sip of juice or water made her cry with pain. I spoke again to the nurse to make sure this pain was not out of the ordinary and mentioned she wouldn’t really eat or drink. She’d only had one real pee today and they said if she didn’t get another one by 5pm we were to take her back to the hospital for fluids. Instead of drinking she wanted to go to sleep, so we planned to go to the emergency room after R came home and we all had dinner. We gave her the prescription medication before we left and she perked up a bit on the car ride (maybe she just needed a change of scenery!). Once we got into a room, she said she was hungry. I got her a Popsicle and she proceeded to eat three of them! She hadn’t even eaten three all week at home. The only thing I can guess is that she didn’t like the all fruit Popsicle I had at home and would prefer the super artificial ones the hospital has. Maybe the fruit based ones were too acidic for her throat! So, here’s a tip – get the cheapest Popsicles you can find! They PA looked at her throat, said it looked good and sent us home. She did say the scabs were still on. I thought for sure that after eating three Popsicles she might have a better night, but she did not.
Day Eight – Wednesday:
This day was so/so from what I can remember – but more toward the good. I came into work super early and left early too. I worked on getting her to eat and drink and she did some good eating in the afternoon when I was home. She had half of a hamburger bun, a cheese stick, a few Popsicles. I thought we were moving in the right direction, but the night was horrible again. She woke up several times crying, one of which was her just hysterical about her stomach hurting. I could hear her twisting her hair and the hair ripping out all night long.
Day Nine – Thursday:
We thought that after Wednesday she must be on the up and up but were disappointed about the overnight. We decided to scrap our long weekend vacation plans. This day was not as good as the day before.
Friday – Sunday:
She was on the up and up but still being really clingy and wanted to be held a lot. Still taking long naps and telling us when she wanted to lie down. I still would not have sent her to school on Monday.
Finally doing much better.
Tuesday – 2 weeks out:
Finally almost back to herself, starting to push boundaries again and skipped a nap.
Thank goodness this seems to be behind us. What a tough ride. She’s back to sleeping through the night (2 weeks later!) I think I’ll know we’re really back to normal when she’s “regular” again. She just looks so thin, although when we took her to the ER she hadn’t lost even a half of a pound. And she needs to grow back all that hair she twisted and twirled out because she was so upset. And her toes are covered in exzema from the stress – she’s never had it before. But I’m just so so so happy to have my happy girl back! And when I walk by her room at night she isn’t snoring and I can’t hear her breathing loudly!
Oh my, how awful. Thank goodness she’s sleeping better AND that the surgery and all it’s horror seems to have helped her snoring and breathing issues. There is nothing worse than when your baby is miserable and you can’t help her. You’re doing a great job!
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