Therapy is EXHAUSTING! Post-Op Day 4

Well, I struggled with putting this post together because I feel like I don’t really have much of an update. Today was just kinda uneventful for the most part…

Last night was pretty good. I wasn’t sure that Everett was going to want to sleep very well overnight after he slept for most of the afternoon yesterday but he actually had a pretty good nights sleep last night and only needed pain medication once. I know how much he needs his rest in order to heal so I am very grateful for a good nights sleep! He opened up both of his eyes a little bit more this morning, even the swollen one. It’s still pretty swollen but I really liked looking over and seeing both of my little buddy’s eyes looking at me.

The neurosurgery resident came by early this morning and let me know that they were going to start raising the level of the external drainage system to begin to challenge the his brain to absorb the CSF. Hopefully tomorrow they will be able to clamp it off and see how is ICP’s (intracranial pressures) respond. If they stay within an appropriate range, they should be able to remove the drain, which is one step closer to busting out of the ICU and into the regular pediatric floor, and even better…one step closer to being discharged and starting rehab.

Physical therapy came and worked with Everett on various basic passive range of motion type activities as well as practicing sitting up again. He seemed to be a little bit more sturdy through his torso but he still has quite a bit of a “bobble head”. I imagine with the post op turban dressing plus, perhaps a post op headache, it makes it really hard to hold his head up. Because we are coming into the weekend, PT might not be able to come by as much but I have plenty of things to do with him to continue his therapy.

Occupational therapy came by and tried to do his swallow study. Well, mister man decided that he was not up for it today and refused to open his mouth for her. We were able to put a little bit of the purée on his lips and he opened his eyes a little bit like he thought maybe it tasted good, but that was the extent of his participation. Again, we are coming into the weekend so it looks like the earliest they will try again is Monday. Hopefully by then he will be a bit more alert and awake and willing to participate. I promised him all the chicken nuggets he wanted if he would just eat the purée…he didn’t go for it. 🤷‍♀️ By the end of both of his therapies today, little mister was exhausted!

Child Life came by today to check in on Bubba. My dear, sweet friend (and former teacher) Mrs. Hayes was so right when she compared Child Life Specialists to angels, they truly are the sweetest, most thoughtful people! Knowing that we were most likely still going to be in the PICU on Easter and not wanting Everett to feel left out, she brought by an adorable bunny craft (that used Everett’s footprints as the bunny’s feet) and we made a forever keepsake out it. She also brought by some Easter themed coloring pages for me to work on and decorate his room with. Regardless of it being a VERY unconventional Easter, these sweet gestures help make this emotional mama’s heart happy.

I ventured downstairs for lunch today. UCLA has this really cool thing where parents of NICU AND PICU patients can receive vouchers for a few dollars off food in the cafeteria. While I am most definitely not a fan of hospital food in general, the food here is pretty decent and, especially since so much in LA is temporarily closed (again, thanks a lot COVID19), there aren’t a lot of options for food within walking distance from the Medical Center. I have had food delivered a couple times (thanks in large part to the generosity of 2 dear friends gifting me DoorDash credits and making sure I remember to eat), but sometimes it is just easier to run down to the cafeteria and grab something and bring it back to Everett’s room and eat it so he doesn’t feel lonely. Today however, I took advantage of a break in the rain and sat outside on the cafeteria patio and ate my lunch. Being here 24/7 alone is hard, there is no way around it. There are so many emotions that come along with having your child admitted to the hospital (especially under the circumstances we find ourselves in…global pandemic and all), and I’m trying really hard to navigate through them but sometimes, like today, said emotions really get the best of me and I just need a moment or two to try and process everything. Plus a little fresh air never hurt anyone right?

I think that is all for today. Please continue to pray for Everett to make progress every day, no matter how small the progress might be. We might not have a lot of action over the weekend but I’m hoping by the time his favorite therapists come back to work on Monday he will have a few new tricks to show them!

-Sara