Today was a great day!
Day 41:
Today was a great day! Keira was a big surprise! Visiting restrictions are limited to two on the permanent list AND you have to be over 18. They made an exception for Keira….once a month for two hours. Not much, but we’ll take it! The girls have had 10 minutes together over the past 5+ weeks.
K woke Tate up this morning with donuts in hand. Those donuts were a quick way to help Tate meet her calorie count today! (Her dietician said ANY calories count) She’ll make it another day without an additional formula feed and, I threw a couple donuts in the freezer to help buy her another day. There’s so little control over anything for Tate here. Hard for anyone, but especially a teen. Getting to choose how she eats is a big deal for her as long as she can maintain it. Once she starts chemo this will no longer be an area she has bargaining power in. We’re happy to help her out with it for as long as we can. To clarify….she’s still getting some g tube feeds packed with nutrition plus protein powder and salt for her pots. So she’s not surviving solely on a donut a day.
The girls did nails and henna tattoos and listened to music. Such a huge boost for everyone’s moral as it just felt normal to all be together-even in the hospital! K was able to stay closer to 3.5 hrs before we felt like we were pushing it. Tim and I were able to get a coffee and listen to a little harp music in the atrium. It was the closest thing we’ve had to a date in a year! Add in PT, OT, therapy, rheumatology visit and mandatory daily central line linen changes and bath follower by the movie Encanto and Tate was asking for her night meds early so she could go to sleep.
Tates BMT Dr. Is on rotation this week…another bonus! We Dr. Eissa! He is truly the most upbeat, kind man and we feel so blessed that he’s leading the charge.
Tate is receiving SO many beautiful valentines cards and surprise packages. Thank You! Getting mail here is so fun for her.
Tomorrow morning the ketamine has to be shut off again. Pray for a peaceful transition and that her pain receptors are reset and more responsive to the lower levels of dilaudid. Also pray her blood pressure stays up. There’s speculation that the BP came up due to the ketamine and not the decrease of dilaudid. We’ll know soon enough.
Tate has another big surprise tomorrow. It’s going to be a good day!!