So much has happened that my mind is having a hard time figuring out where to start....
I guess I want to start with some people I have met because of Charles.
For starters, we have everyone from the hospital. The nurses, techs, doctors, specialists and all the other behind the scenes people.
We have wonderful friendships that came from our nurses and techs. The doctors and specialists were amazing. Some of the best in their fields. I have a scary working knowledge of the human body and brain despite never wanting to take anatomy....
We have many people we keep in contact with, and many more that we don't.
There is one woman from the surgery waiting room who is one that we do not keep in contact with. I couldn't even tell you her name. But I can tell you what she looks like, I can tell you what her voice sounds like. But most of all I can tell you that she has a wonderful heart.
This woman went out of her way to make sure that I was okay when I was alone and terrified.
Charles had been in the ER to see the Wound Clinic team. They didn't have their own place so they met with patients in empty ER rooms. The day before Charles had thrown up. Just once, but that was unusual and a sign of a shunt malfunction. So I figured since we were there the Neurosurgeons should at least have a look at him. I knew in my heart something was off, I just didn't want anything to be wrong. I spoke on the phone with Wally, one of the best on the team, and he said the fastest way to be seen was to be admitted to the ER. That would put a rush on all of the test results and we wouldn't have to wait all day in the clinic. So I reluctantly agreed to have Charles admitted to the ER. We were taken to do a CT scan and sent back to our room to wait for results. Once we were back in our room waiting to hear back, Charles began to change his behavior. He became less and less responsive.
Here he is just before going into surgery. He had almost no startle reflex and he just laid there. One of the scariest moments of my life.
Cody was at work and I couldn't reach him. My cell phone coverage was spotty at best and I could hardly get enough coverage to make a phone call. I called my mom in tears. I was alone. My husband was at work, and even if he got my call he never would have made it to the hospital in time. My mom was all I had to try and keep me calm. They came in and they looked so nervous. Neurosurgeons never look nervous. They hardly show emotion. Not this time. All serious faces as they told me that Charles had too much fluid drained from his shunt and that it caused his brain to collapse inward. I was a mess. My child was unresponsive. There were grim faces all around me. And I was alone. Utterly alone. No one to hold me and tell me it was alright. No one to turn to for comfort. As they were waiting to take Charles into emergency surgery I had one thought. Charles needed a blessing. He needed it immediately. I needed it to happen to help keep myself calm. I asked our nurse to find someone to give him a blessing and within a few minutes two men arrived. One was the tech who had admitted us to the ER and the other was from another area in the hospital. The blessing was beautiful. I cannot recall what was said aside from the fact that Charles would be blessing lives into adulthood. That was all I could remember and that kept me sort of in control. I remember talking to my mom and having her tell me to hold my baby and take pictures. It could be the last time I get to do it. I did just that. I held on to him and took pictures of us.
There is something about this moment that despite it's difficulty was beautiful.
My poor baby was so sick. It had happened so quickly. I am positive that had we not been at the hospital when we were he would not have made it. I knew in my heart something was not right. I was prompted to insist on being seen. In this moment I was reminded that Heavenly Father is in control. He prompted me to seek medical attention when all seemed normal. And within a half hour it was a critical situation. I carried Charles to the OR. I didn't want to let him go. I cried and asked him to simply open his eyes and look at mommy. Just before going into surgery I begged him to do just that. And for one brief moment he opened his eyes and looked at me. I was so relieved that he could still hear my voice and respond to my plea for him to look at me.
I told him how much I loved him and that I would be waiting for him.
I don't know how I made it to the waiting room. I just remember sitting down and trying to get a cell signal. By now Cody knew and was on his way from work. His parents and his sister were also on their way. My dad had called his parents and his sister and they were also on their way. I called my mom back and was in tears as I told her that his brain had collapsed and that the doctors couldn't tell me anything. I remember telling her it didn't look good and that the doctors had been pacing in the ER waiting for an OR to open up. After I hung up with my mom, this sweet lady who worked the desk came and sat by me. She asked if I wanted a warm blanket and so I said yes. I hadn't realized how cold I was. As I look back I can see that I was in shock and she recognized it and acted. She told me everything was going to be okay and that if I needed anything to ask her. Shortly following her returning to work, but still keeping an eye on me, Cody showed up along with everyone else.
Side note: This woman's kindness is something I think about all the time. She would still talk to me following this event whenever she saw me around the hospital. She always wanted to know how he was doing and to see pictures of him. Words could never express my gratitude to her at that moment. A moment where every eye in the waiting room was on me. No one dared say anything and feared that one day this could be them. Not helpful in a stressful situation. But this woman saw that I needed someones kindness. Not their stares. Not their pity. She chose to love where she didn't have to. She gave me enough comfort to last until Cody and our family got there. For that I will be eternally grateful.
Charles came out of surgery doing great. They put in external drains so they could control how much fluid was drained. He looked so much better after his surgery and he was happy to see Cody and I. I was so relieved when we talked to the doctor and he felt that everything had gone well. They couldn't tell us much except that a total brain collapse in uncommon, and that it is even more uncommon to be perfectly fine afterwards. Charles was a living miracle. He stumped doctors. He was perfect!
Charles holding his Daddy's finger after surgery... He still looked so tired from his ordeal but he seemed so much better.
This is where it gets interesting. The scan on the right is from July 1, 2014 and the scan on the left is from exactly one week later July 8, 2014. I could not believe what I was seeing. This scan was shown to us side by side in the PACU(Recovery). We were in utter dismay. We knew that Charles had had fluid draining and his head had sunk and shown his bones protruding. We had no idea this would happen. Neither did the doctors... This was a complete surprise to them as well.
We got to celebrate one holiday with Charles at home. The 4th of July. So we had pictures taken to celebrate that momentous occasion and I am so grateful that I have those pictures. They help show how much fluid drained from Charles' brain....
Charles discovered the mirror.... His first time looking at himself!! Such a cutie! What can I say? I am super biased... But he is the most beautiful baby I have ever seen despite his "abnormal' appearance. His eyes were so full curiosity and love.
I insisted on these pictures :) Our little miracle baby home with us and in actual clothes! This happened very few times and this day was beautiful!! We had a picnic outside with family. We got to celebrate one holiday with our baby. This is still rough and raw for me. But I am grateful that we got that. One wonderful holiday at home together.
There are so many others I have met because of Charles. This is just one story of how much one person meant to me. I have many more stories to tell. And many more people I have met because of Charles. What a blessing he was in our lives! We have wonderful people in our lives because of this little man! I am SO grateful to be his Mommy!!
Charlyse Wilson
