Sitting Up is Hard Work! Post-Op Day 3

Good news…I remembered what day it is today! It’s THURSDAY!!! (I know all of you were concerned about that!! 😂😂😂)

Nights are still proving to be a little bit rougher than the daytime when it comes to mister man. We’re noticing a trend that in the evenings and into the nights he begins to get more agitated and irritable, his heart rate gets super high and he does this “fun” thing where he cries and holds his breath until he starts to turn a not so lovely shade of blue and all the alarms in his room start to go off. No sooner do the nurses rush into his room that he decides to stop “showing off” and everything goes back to normal. I told him that the his nurses are going to start calling him the boy that cried wolf if he keeps this up! Seriously though, his nurses have been wonderful in doing their best to sense when he is uncomfortable and stay on top of his pain. Again, i might be biased, but nurses really are superheroes!

Today has been a very eventful day for our little buddy! The physical therapist came this morning and worked with him and she is encouraged that he is more alert and aware today. She gave me some things to do with him to begin giving some neuro-sensory input from the right side of his body back to his brain. Remember that because of the type of surgery he had, the right hemisphere of his brain is now neurologically responsible for his whole body (instead of just the left side) and basically has to be trained and taught to control the right side of his body. PT was able to sit him up and, despite lots and lots of grumbling, he tolerated it pretty well. Hopefully we will be able to get him sitting up and supporting the weight of his own head and torso more and more over the next several days.

Next up, after a short rest break, was Occupational Therapy. OT is working with him on recognizing that the right side of his body is still there. Again due to the hemispherectomy, his brain basically thinks that the right side of his body doesn’t exist, so something simple like touching his right side with his left hand and the left side with his right hand is so important! OT also had him sit some more and he did such a good job! He even opened both of his eyes a little bit! His left eye is still pretty swollen and bruised so he can barely open it but a little bit open is better than swollen shut like it was yesterday!

Dr Fallah, the neurosurgeon that did Everett’s surgery, popped in to say hello this afternoon and seems pleased with how Everett is doing. The output from the surgical drain is moving in the right direction, the swelling of his left eye is slowly going down and he is becoming more and more alert with each day that passes. He said that over the next few days he feels that we will see Everett really turn a corner with his activity level and periods of alertness. The big thing coming in the next the next couple days will be when they clamp off his surgical drain and challenge his brain to begin to absorb the cerebrospinal fluid without the assistance of the external drain. This is so important because, if he is unable to reabsorb the fluid and regulate the intracranial pressure on his own, he will potentially need a shunt to help drain the excess fluid off. We are praying that his body is able to regulate this on its own so that he won’t need an additional surgery.

Pain management is still proving to be a bit of a struggle. We are really hoping that over the next few days some of the post surgical pain and swelling will begin to decrease so we can work towards only having him on Motrin and Tylenol as opposed to the heavier narcotic pain medications. But until then, I fully plan to continue to advocate for him to get what he needs to manage what I can only assume is a pretty massive headache.

We are so proud of how hard our little guy is fighting to get better. I can only imagine how hard this whole process has been for him. While it is emotionally and mentally challenging for us, I can only assume it is both of those plus extremely physically challenging for him. Let me just say that he is going to have QUITE the story to tell someday!

Happy almost Easter weekend friends. I know given the global pandemic going on right now it is going to be a little bit different Easter than most of us are used to but I hope that each of you remembers the true reason we celebrate Easter…”He is not here, He is RISEN!”

-Sara