Saturday, September 17th - Day 90 Update

Hello everyone,

Tori's sleep pattern Friday night took a bit of detour as she woke up again around 3:00am but couldn't get back to sleep until 6:00am or so... There were several factors to this one being that Maria opted to see if Tori could return to sleeping without a Valium. Tori tried sleeping during that span but just couldn't get into the deep sleep mode she needs and then the nurses had to take blood samples and place a new IV around 5:00am... She was given a Valium after all of that which helped her sleep from 6:00am until 8:30am.

Much of Tori's pain now seems to be coming from her left arm, hand and shoulder. The twisted inward position of her arm just looks like it hurts and I can't imagine having my arm twisted like that. Since she begins to tremble greatly and becomes seriously agitated if you try to move it, we decided to run x-rays today to check and see if any bones were broken. Tori's hand is very swollen as well so checking for any broken bones was definitely needed. The x-rays indicated that there are NO broken bones so the next test involves an ultrasound to check for possible blood clots. This test will take place tomorrow. In the meantime, Maria and I just had to straighten her arm out onto a correct position and place an inflatable splint over it and her hand. This completely straightens her forearm and hand out. We also did this right before we both left the hospital tonight and we informed the nurse that it should remain on all night if Tori can tolerate it. Grandpa and Grandma Schmanski are taking a turn tonight and watching Tori while Maria and I try to spend a night at home with Whitney and Brendan.

Outside of that left arm, I would say that Tori is looking pretty well. She is tracking nicely once again and seems interested in any activity in her room. Her painful wincing and grimacing has also greatly decreased. She is very alert once again but now we have some ground to make up in her occupational, physical and speech therapies. We will determine Tori's next steps and location on Monday. Tomorrow we are going to get her into her wheelchair for as long as we possibly can.

I learned today that working with the nutritionist to get Tori on the Nutren 2.0 feed was challenging. She apparently was against it because she thought Tori could quickly get too fat!! Boy, don't we wish!! :-) We, as well at the lead attending physician Sara, were adamant she needed the feed so she gave in. Again, getting some weight and fat on Tori to help in solving her SMA Syndrome is our top priority right now.

Tori's Bilious output from her stomach ramped up to over 750 milliliters again... The bile color is also a light green as it should be but the amounts seem to fluctuate every day. We still really don't know why... As long as we are tracking it and replacing it with fluid through her IV line we will be fine. But at some point this will need to be resolved and who knows, maybe it is weight related as well.

Alright, I just called Grandma Schmanski and Tori is calmly sleeping. I'm hoping that Tori cooperates and gives them a quiet and uneventful night.

Thanks again everyone!!

-Tim