Saying Goodbye to UCLA. Post-Op Day 11 / Rehab Day 1

I know, I’m late again getting this posted. 😬 Yesterday was a pretty big day with lots of excitement and changes. After 10 1/2 days, we bid farewell to UCLA yesterday morning. Our chunk of time at UCLA, starting with the day of his surgery all the way through his week long stay in the PICU, was as good as we could have hoped for given the current circumstances in the world right now. However his last 3 1/2 days at UCLA were really rough. As I mentioned previously, they feel like Everett developed something called aseptic meningitis, which unfortunately can be a side effect of the type of major surgery Everett had, and from my research is extremely painful…think the worst headache you have ever had that just won’t go away. I can only imagine how irritated his poor brain is after the surgeon poked around in it for such a long time, so once they tapered him off the steroid he was on after surgery, the inflammation in the areas surrounding his brain reared it’s ugly head. So for three long days and nights, Everett just seemed completely miserable. His heart rate and respiratory rate seemed to always be elevated, his blood pressures were all over the place and he would spike varying degrees of fevers throughout the day and night (side note: the fevers were never so high to concern neurosurgery that something else might be awry, but still…). All of these things combined made for a very unhappy Everett. He wasn’t sleeping very well, he was always very grumpy and irritable and just seemed so uncomfortable. The hardest part of all of this, besides watching my sweet baby be so miserable, is that I felt like i didn’t know exactly how to best advocate for him. Again, I digress….our hope right now is that this meningitis won’t last much longer so that our little brave warrior can focus on his healing and rehab.

After another tough and mostly sleepless night, our transport to Children’s Hospital Los Angeles (CHLA) where Everett will be doing his intensive inpatient rehab for the next several weeks arrived bright and early. The EMT’s that were with us for the ride were really friendly and just loved Everett. They gave him the cutest little mask to wear (the LA mayor released a statement since we have been in the hospital that everyone is REQUIRED to wear some type of mask if they are out in public now…this includes little boys on their way to new hospitals lol) Everett hated the mask but he just looked so stinkin cute in it! Also, for the first time in 11 days, Brandon got to see and hold his boy. I know you probably can’t tell from the picture, but Everett really was happy to see his daddy. CHLA will also only allow one of us to be there at a time but unlike at UCLA, we are allowed to swap out. So, Brandon can be there and spend some time with Everett, and this mama can get an occasional break!

We got all settled in at CHLA pretty quickly. Everett met so many new friends (his new doctors, nurses, and most of the therapists that will be working with him while he is here). Everyone in the rehab department at CHLA is so nice and friendly and you can just tell they are so excited to help Everett get better. The rehab floor is so bright and inviting and it is so neat to see all the other kids all working hard to get better. I am so excited for Everett to make so many new friends while he is here. They are estimating that we will be here about 4 weeks, but that is all dependent on how well Everett responds to his therapy and the progress he is making weekly.

They did a little bit of evaluation based therapy with him yesterday as well. They have a really cool therapy gym that they work with their kiddos in so it gets them out of their hospital rooms and into a different environment. The physical therapists evaluated him first so determine their plan for him going forward. I’ve mentioned this before but the type of surgery Everett had caused the whole right side of his body to loose all of its strength and motor function. This is the biggest reason we chose go forward with inpatient rehab for him post-op. Prior to his surgery, Everett was walking, trying to run and climbing everything and we wanted to give him the best shot at relearning those skills. Working with physical therapy daily here at CHLA should help his brain form new connections to help his body remember how to work the right side of his body. Obviously with all the excitement and changes from the early portion of the day, Everett was pretty tired and didn’t want to participate a whole lot in the activities but he did work so hard at sitting up, holding his head up straight and he even did some “tummy time”…it sounds so silly to talk about an almost 2 year old doing tummy time but it is so important to provide neurological input from the right side of his body back to his brain. He did such a good job despite being so tired, I’m really so excited to see how much progress he is going to make over the next several weeks.

Next up we got to meet his Occupational Therapist, Eunice. She is so sweet and seems like so much fun, you can tell she loves working with these kiddos! She brought lots of fun toys with her to see how his fine motor control is on the “strong” side of his body. He did so good grabbing at the colorful blocks and playing with the strings of beads. She also worked again with Everett on some feeding therapy. She brought out a cup of applesauce and said she just wanted to get an idea of what he could do. Well let me tell you, this little nugget loves his food and apparently felt like showing off! Eunice would put the applesauce on a spoon and mister grabbed the spoon right out of her hand and started feeding himself…keep in mind he didn’t even do that on his own at home! He loved every single bite of the applesauce, Eunice said this was such a big step in the right direction of getting rid of his NG tube!

After so much excitement with his PT and OT, mister was pooped! He was supposed to have an evaluation with the speech therapist but he decided to sleep through the evaluation instead. 🤷‍♀️ he will officially meet his primary speech therapist on Monday morning though so he will start getting to work then!

Brandon came back up to the hospital to spend the night with Everett and for the first time in 11 days I left the hospital. It felt so strange to leave all by myself but I know how much I needed a little breather and how much Brandon needed to spend time with Everett. Brandon will be headed back to Fresno to go back to work on Tuesday and won’t be able to come back to LA until Sunday evening so he is going to try and spend as much time with Everett as he can over the next 3 days before he heads back home. This tired mama was so excited to take a long hot shower, drink a glass of wine and sleep in a real bed! But man did i miss my boy!

We are looking forward to getting started for real on Everett’s therapy on Monday morning and hopefully bringing many more positive updates on his rehab journey. Please continue to pray for his healing as well as for him to have increased strength and stamina as he begins his intense rehab. he is such a strong, determined, stubborn little boy and we hope all of those things will lead to a successful rehab.

-Sara