Taylor was in a lot of pain this morning. They wanted to get a CT scan to check that everything in her head was okay, as she does not have any monitors in there or a shunt, so they need to make sure she isn't getting swelling. Taylor was in a lot of pain and they were not wanting to give her pain medication and of course, Mindy was really concerned and although she wanted to let Landon sleep, she gave him a call. Landon certainly was not feeling the answers they were being given were good, so he demanded they speak to the neurosurgeon. They ended up calling and giving her some sort of medication (dilotten ?) but Mindy and Landon were still pretty concerned as she was in pain and they were not sure she could stay still, etc. for the CT scan. Taylor's tongue was super swollen and she has continued to vomit, so they were super worried that she could choke to death if she got too agitated as she was really agitated today.
She managed to get through the CT scan, and it was all good.
What is super heartbreaking is that they stopped her pain meds as her tongue is so swollen and her CO2 levels are high, so they needed to stop them to get the tongue swelling down and lower her CO2 levels. Let's say it has been a heartbreaking day watching her in such pain and discomfort. She has been awake more and crying and whining from the pain, etc. as well she continues to vomit. This is all considered normal by the doctors and she should start feeling better. Once she is out of the "danger zone" they can increase her pain meds and get her more comfortable. I went to visit Mindy tonight as Taylor did not want anyone but her Mom and Dad, but of course they are in PICU so I just sat farther back where Taylor didn't have to see me. She was vomiting and crying and I felt my heart being ripped apart. I wish I could take her pain for her.It kills a piece of me too having to watch as Mindy and Landon witness this...its so not fair! They have started to give her Tylenol by suppository since she won’t take it orally, so hopefully that will help some too. She is still very fidgety with her arms and legs and touching her face and head. She doesn’t want to speak with her swollen tongue.
My Mom came this morning so Mindy and Landon could rest for a few hours. What is super sad is seeing all the kids in PICU with no adults or family. No parents, no anyone but the health care staff. In some ways I feel how blessed we are to have everyone that is willing to come and watch Taylor, her amazing grandparents Don and Roberta, Mom and Danny who drop everything for her, friends and family who are chipping in to help keep them fed and watered while they care for Taylor, and all of you reading this who are praying and sending hope, positive energy her way. Mom went home this afternoon to cook Mindy and Landon dinner, making them some comfort food, roast beef, mashed potatoes and corn. Mom forgot cutlery and so I went searching for some, and you know what I found? There are spoons and knives, but no forks. I also had to go search them out, which is why I am recommending just putting some in with any food you bring.
Mindy says they are watching fuller house on her iPad for bits of time while she is awake until she falls asleep.
If I get more time I will try to give you some of our more ridiculous moments, but I am kinda tired and this is already really long.
Love you all, keep sending prayers, hopes, wishes and strength.
P.S. not to brag but Taylor said, "I Love You" last night to me, and that was the most AMAZING 3 words
Love to you all ❤
Thanks for the update Leah:-) When will you get biopsy results and what they plan on doing for her/I want this monster to go away.
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