January 10, 2024
1 Year +320
We’ve had the entire family home since Friday night when TJ flew in. We have loved all being together and have played board games (Tate too-a big deal for her to sit at the table through)and watched movies. Saturday night we were given tickets by Round Up River Ranch to go to see the Zoo Lights. (Thank you RRR!) It was so special and so much fun and made up for some of the lost Christmas during Decembers admissions. We still had our tree up and did a little Christmas with us all together beforehand. The boys are home yet until Monday. I missed out on two weeks of Drew’s time here while in the hospital, so it has gone so quickly! So grateful for every moment, all the laughter and extra hugs. I cherish these times and try to soak it all in. So thankful.
Tate has seen and talked to PT, Special Care, Neurosurgery, Infectious Disease and Intestinal rehab/GI already this week. The biggest news was despite initial pause from Tate’s neurosurgeon, the pain pump surgery is back on the table. We should have a date by the end of this week. This is an answer to prayer despite our apprehension. We are trusting that this is the best option to move forward.
Tate has been feeling worse again the last few days. Lots of GI issues. She’s back on a scopolamine patch due to worsening nausea and we’re trying everything to get her GI system to do what it’s designed to do. In the meantime, she feels pretty crummy. We are so very grateful for our GI team. From the nurses, Tates dieticians and Dr, Tate is well attended to. We have a plan from a telehealth visit today after Tatum was just feeling too sick for a trip to the hospital and clinic. I appreciate how willing they are to flex with Tatum’s needs. But It’s an uneasy feeling when you are constantly on edge that any new decline will shift enough where I’m out of home tools and land us back in the hospital. So we take it one day at a time.