Here I go again with the multiple days in one update. Rehab life is busy busy busy and I feel like it is just so much easier to lump a few days into one post. I know I said it before but I’ll say it again, when Everett’s medical team at UCLA and the friends we have made during this process told us that inpatient rehab was intense…they definitely weren’t joking! He is working so very hard and overcoming so many odds every single day and we couldn’t be prouder of our tough little guy!
Tuesday (day 5) was a pretty good day. Monday night was another rough night of very little sleep however. The NG tube is the literal bane of Everett’s existence and he still does everything in his power to try and get it out, which has lead to his hand being stuck in a padded mitten to prevent him from pulling the tube out. Both of these things have brought about a little buddy who doesn’t like to sleep because, I can only assume, that the tube drives him nuts! PT and OT continue to work with Everett on remembering that he has a right side of his body. I have said several times that I am having a hard time wrapping my mind around the fact that his little brain no longer realizes that one whole side of his body exists. Something that seems so simple to me like touching my nose with my right hand is something that his brain, at the moment, no longer remembers how to do…which is where all this therapy comes into play. PT has had him working on standing quite a bit in the standing frame, which he is still trying to Houdini out of but he is slowly beginning to tolerate it a bit more. Let me just tell you that watching Everett work so hard to stand up or to just put pressure through his arms and legs makes me realize just how strong and brave my little boy really is. Everett also proved to the speech therapist today how fast and sneaky he really is. We had been giving his hand a rest from the protective mitten he has been wearing to stop him from pulling out his NG tube, and everyone knew to just keep a close eye on his good hand. Well, I had a zoom call with Everett’s neurosurgeon to talk about how he is doing and how his incision is healing etc… at the same time he had speech his speech therapy this morning, so i sent him off to speech therapy, mitten free. Imagine my surprise when he came back and his NG tube was out of his nose! 🤦🏼♀️ The poor speech therapist (who was just filling in for his normal one) was probably traumatized to say the least, she just kept apologizing and saying how “fast” he was with his little hand. Little stinker! Unfortunately, this meant that they had to put in a new one which little mister was less than pleased about.
Brandon came to the hospital on his way back home to Fresno to spend a little bit more time with Everett. One of the hardest parts of all of this COVID-19 quarantine has been not being able to be together as a family during this whole process. I mean it is all hard and draining and exhausting, but add to it not being able to spend time together as a family…it’s just rough, there’s no way around it. Brandon and I were able to walk down the street to the Vons/Starbucks while Everett was doing some of his afternoon therapy, so that was nice to get to breathe some fresh air (through our masks of course) and get just a few precious minutes together before he headed back home for the week. 😢
Wednesday (Day 6) morning started bright and early with speech/feeding therapy with Ashley. The goal for the day was to get Everett’s diet advanced from purees to soft solid type foods, and guess who knocked that goal right outta the park!!! I am honestly so surprised at some of the foods that this kiddo is eating (keep in mind that before surgery his diet consisted of a cakes, fruit, chicken nuggets and sweet potato fries), he has been willing to eat just about everything that we have given to him, the one exception being the puréed broccoli (don’t blame you there kiddo!). Ashley was very impressed with his improvement in his eating and especially in his chewing since the last time she saw him so she was happy to advance his diet! Sayonara purees, hello real food! PT and OT continue to work with Everett on weight bearing exercises on both his legs and his arms. They all seem to be very encouraged with the progress he is making every day. Our “fun” highlight of the day on Wednesday game during a particularly epic meltdown Everett was having around 8:30 pm. When I say meltdown I mean NUCLEAR MELTDOWN, think screaming, crying, batting at his face with his little mittened hand, more screaming, it was awful. Well, in my attempt to call Brandon so he could help me try to calm him down via FaceTime, this little Houdini managed to get his NG tube out of his nose for the second time in less than 36 hours 🤦🏼♀️🤦🏼♀️🤦🏼♀️. Keep in mind that he was wearing a mitten and the NG tube had at least 3 pieces of tape securing it to his face! Did I mention how much he obviously hated that tube!!! Well, I managed to convince the nurses not to put the tube back in on Wednesday night and let me plead my case to the doctors in the morning as to why he didn’t need it anymore. He still didn’t have a wonderful night of sleep but it was definitely better overall than the past several nights had been.
Thursday (Day 7) Success! I convinced, at least for now, the doctors to leave the NG tube out and see how he does! He has a water/liquid goal he has to meet everyday in order for the tube to stay out but for now the tube is out! 🙌🏼🙌🏼🙌🏼 Please pray that we will be able to meet his goal daily and also that we will find a cup that he will be able to learn to drink from. He is having a hard time with the straw cup he used before his surgery so we are basically having to play process of elimination to see which cup will work for him. Everett continues to show everyone what a good eater he is at every meal, the nurses and aides are always so impressed at how much he eats! The PT girls were also so proud of him this morning because he was able to stand in the standing frame for almost the whole 30 minute morning PT session! This is HUGE guys, less than 2 weeks ago he was in the PICU and could barely open his eyes, and now he is working his tail end off on standing with support! We are so proud of our little warrior and how hard he is fighting to get better.
It is looking like our estimated date of discharge from CHLA is going to be sometime around May 22. Oy…that seems so far away and wrapping my head around living in a hospital for another 4 weeks is tough to do but I am willing to make the sacrifices if it means my little nugget will have the support and therapy he needs to recover. Please continue to pray for progress every day for Everett, that we will find the perfect sippy cup and that we will be able to find the joy in all of his baby steps toward recovery. I truly cannot wait to show him this blog someday so he can see how brave and strong he was during this time in his life!
We love you all!