If you missed Part One to the story, you can read it here.
The next day, we waited for the PICC nurse to arrive. The line was finally put in in the afternoon and while they were doing it, they had to move his intubation tube to the other side. This made Simon incredibly angry and he moved both arms and legs. It was nice to see him angry and expressing emotion, which made us hopeful he was still “in there”. Soon after, they removed his tube and his pretty, perfect lips were a glorious sight to behold.
I slept with Liam across the street again that night and Jesse told me in the morning that Simon woke up calling for me. I was so sad to miss hearing his sweet little voice and couldn’t wait to hear him talk again. In retrospect, I feel like this day is the day that we finally relaxed and life moved back to a normal pace again, instead of a slow, tortuous crawl. They moved Simon to a crib-like bed and took two more tubes out, so we were finally able to hold him!
Speech, Occupational and Physical Therapy also assessed him and were amazed at how well he was doing. His neurosurgeon came in and called Simon “his hero”, which I thought was funny because at this point, Dr. Meltzer was my hero for saving him. Simon’s left eye was still really swollen from the pressure of the blood in his brain and it was hard for him to open. His breathing continued to be labored, but when he was awake, he tried to move around a lot, which everyone was happy to see.
Because he wasn’t medicated as much anymore and able to move around, they moved him to a new bed, that is similar to a crib with both sides that raise up, so that he couldn’t fall out. My amazing friend, Cheryl, made Simon a flag bunting to brighten up his room.
The OT (occupational therapist), Missy, handed Simon a sippy cup with water in it and he brought the cup to his mouth independently with his left hand and downed it in less than a minute, which completely floored her. Because of my background in speech therapy, I worried a lot about his speech returning, as he was already ahead of his age-group before the accident. That day he was able to repeat “mama”, “da” (dada), “truck”, “more” and “nana” (banana). This made my heart soar!
The doctors talked to us about moving Simon to less critical care because of his miraculous improvement. We were blown away at the prayers and outpouring of support from Facebook. People in other countries were praying for us and posting encouragement to our Facebook page “Praying for Simon Frey”. At one point I was worried about Simon’s personality not returning because he hadn’t smiled yet and Jesse reminded me to post a status update with a specific prayer request for that since there were so many people praying diligently for Simon. We were incredibly uplifted from believers near and far.
The next morning I rushed over to Simon’s room and he woke up and called for me. When I set my phone down next to him, he immediately grabbed it and held it up to push the buttons. I asked for it back from him and he said “no” as well as smiling at me! I was truly encouraged that God listens to our prayers, even the tiniest concerns. Jesse and I started thinking that Simon was bored just lying in his bed, so we turned Elmo on and he was stoked. That day, January 5th, marked Simon’s 17-month mark as well as one week since the accident. It was hard to believe that it had only been a week and I felt like I had aged five years in that week.
The doctors came by and told us that the next day they planned on moving us to rehab, depending on how he was doing, which meant that moving us to rehab, depending on how Simon’s therapy went, we could potentially go home in two weeks. Two weeks?!? That is crazy to believe since right after the accident I figured we would be in the hospital for MONTHS. The rehab doctor also told us that he believed that we would be going home with no equipment, meaning Simon would be walking. PRAISE THE LORD!!!!!
(I got this fortune cookie with my dinner that night and it made me smile.)
On Friday, January 6th, Simon’s breathing was still labored with a lot of gunk still in his lungs. He also seemed uncomfortable and almost frustrated at himself because it looked like he wanted to say something, but didn’t know how.
We talked to an intensivist and he said that with brain injuries like Simon’s, it was possible to have vocal fold paralysis, so they looked into that, as well as the possibility of whooping cough. Every day there seemed to be new questions or scary possibilities, but we waited and trusted in our God. An ENT came to check out Simon’s vocal folds and they were fine and we waited to hear results of the whooping cough test (which were later proven negative). We prayed fervently that Simon would sleep well through the night and breathe perfectly in the morning so we could move to rehab and get started on some hard-core therapy.
It was incredible to see Simon regain so much more of himself every hour and equally frustrating that little things (like waiting for test results) were holding us back, but we trusted God’s timing and tried our hardest to be patient.
Simon’s breathing improved the next day and even though we hadn’t found out the results of the whooping cough, we were pretty sure he didn’t have it. He did seem to be grumpy and uncomfortable, so we prayed that he was able to get rest and not be in too much pain. They told us that they planned to move us to rehab the next day, so we were really thankful.
He was also able to get his feeding tube out. We had to make sure that he ate enough by himself, so he didn’t have to get the tube put back in. This task, in itself, was challenging because Simon has always been the kind of kid that ate when he wanted to and refused to eat when he didn’t feel like it. It would take a whole day of us offering him a glass of milk every chance we got to get him to drink the whole thing. It also didn’t help that they had him on a soft foods diet and Simon is not a fan of “mushy” texture. We tried to order him as much as possible (mac ‘n cheese, mashed potatoes, apple sauce, pudding, oatmeal) to give him as many options as possible.
Simon started doing a weird rolling/blinking with his eyes that concerned us and also seemed to be bugging him. The doctors suspected that it was a dry eye problem.
Thanks for reading. Part five will be continued next Monday.