Lesson Learned…Post-Op Day 8 (a little bit late 😬)

Good morning! I’m so sorry for getting yesterday’s update out so late. Since coming to the peds floor from the PICU, I feel like the day just got away from me faster.

Bubba actually had a pretty good nights rest on Monday night. I wasn’t sure how he would do because he slept so much of the day after his MRI and during our transition to the peds floor. He did have a few good periods of wakefulness in the evening though so I think that helped him sleep a little bit better. He did spike a bit of a low grade fever however so they drew some labs and collected some blood cultures from his central line just to be safe. We are hoping it is nothing and that all of this is just out of an abundance of caution. This mama is very thankful for a good nights rest also. I had a pretty rough day Monday with lots of emotions and frustrations bubbling out so a good nights rest was much appreciated and helped me to feel a little bit more “human” and less of a hot mess. When you run on an abundance of caffeine and not a whole lot of sleep for a week straight things are bound to catch up with you…I learned that today for sure!

As far as “extra curricular activities” like PT and OT, yesterday was pretty quiet. They had planned to come and try to do his swallow evaluation again but as a condition of his admission to post-op rehab, he had to be tested for COVID-19…which meant we were stuck in his room on isolation precautions for most of the afternoon. Good news though…he doesn’t have COVID! It felt so strange to be stuck in his room for that stretch of time though…it made me wonder how much worse it is for those who actually have tested positive for COVID and have to spend so much time alone in their rooms with no real outside contact. But I digress…

Mister also decided to pull a fast one on me while we were in “isolation”. Since he has had so many tubes, lines and wires attached to him since surgery, they have been keeping his good hand in a little protective mitten to stop him from accidentally pulling anything out. Well, yesterday I thought I would be a nice mama and let his hand out for a little bit so he could wiggle his fingers and play with his stuffies. Let me tell you this boy is quick…as soon as I took his mitten off and turned around to set it on the table, he had grabbed ahold of the feeding tube in his nose and pulled it right out! 😳😳😳 Lesson learned, never turn your back on a toddler! Unfortunately, because they haven’t been able to do his swallow study, they had to put the feeding tube back in, which he was not to pleased with. Sorry buddy 😞

It was looking like we would be going to CHLA for rehab as early as Thursday morning but now it is looking like, thanks to these low grade fevers he has been having, that this might be delayed. Please pray that they will be able to determine the reasons for these fevers, and that whatever that reason is, that it can be easily fixed.

I will do my best to have today’s update up tonight! I love how involved so many of you are with our brave boy’s journey and how many of you are praying for him daily. We are so thankful for all of the love and support we have received from so many people through this whole process 💜 please continue to pray for our boy, he still has a long road to recovery ahead of him but if anyone can do it, it is him for sure.

-Sara