I checked into the hospital with Alessandra and reality hit pretty quickly. Our room in the EMU - the Epilepsy Monitoring Unit - was not ready because someone else's testing had run long. Instead, we were checked into the Children's center. I saw a child, around my nephews' age, walking down the hall using a walker needing the assistance of a few adults. I saw a child wheeled down the hall in a wheelchair, hunched over, his right eye swollen shut with bruising. Lord have mercy. This isn't a waste of time. This isn't an interruption in my plans. This is my child's health. What could possibly be more important. How can I help? What do I need to do? Clear my calender.
My beautiful girl. We will stay here as long as we need to. I want a diagnosis. I want to help you. I need for you to be ok. A stubbed toe makes a mama's heart skip a beat. Here we are trying to rule out Infantile Spasms. Nothing is more important right now.
Time seemed to slow down while we were in the hospital. Alessandra did not appreciate the process of applying the electrodes. Our room was set to freezing temperatures and it took a while for someone to finally tell me I could change the temperature. She caught her first cold in the hospital and by the last day would wake up gasping for air. She felt confined. We carry her in our arms and walk around the house - we put her in the stroller and push her through the trails, we lay her in the living room & in her bedroom and let her roll around playing with her toys. She was confined to such a small space. She laughed so much less than usual. The crib was made of metal (on which she struck her head several times), the floor was hard and piling up blankets to create a play area only made it a slightly more acceptable play area. It felt like a hospital and not like home.
Alessandra in the Children's area:
I was furious when Alessandra woke up with a snotty face. Her cheeks are pink from a low grade fever. She's never been sick and I couldn't believe she could be sick while going through this testing process. She had enough to deal with without getting a cold.
Daddy, grandparents, aunties and I tried to keep her happy and entertained. She is such a trooper.
I waited, waited, waited. She'd had so many episodes at home but 48 hours into the hospital stay she hadn't had one at all. I was frustrated and tired. I felt like the hospital staff was rather unsympathetic about how sick and unhappy Alessandra was. I was so ready to go home by Saturday evening. I asked that the doctor be called in because I was ready to leave. The hospital staff finally took us seriously and began efforts to keep us there. I prayed for patience, I reminded myself why we were there, and I tried to shove down the anger I felt about the fact that my precious girl was going through this ordeal.
Finally, Sunday at about 3:30 am she woke up. It always takes me a minute to understand what is going on when I wake up in the middle of the night. I looked over at her and knew something was wrong so I tried to get a look at her there in the dark and I pressed the emergency button. The hospital staff could see Alessandra through video monitoring so the room was instantly filled with people. They saw her arch her back, they saw the vacant expression on her face, they tried to get her attention and get her to focus. She wouldn't respond to anything. Finally, someone else was seeing what I've seen alone in the middle of the night. I wanted to hold her hands and talk to her to let her know I was there, like I always do when something happens, but I had to stand back and let her be observed and monitored.
I let out a big sigh of relief. It finally happened with an EEG on her head to tell me what it meant. After a minute or so, the nurse reached for her pacifier - she responded and focused - no one takes her paci!
We technically still don't have a diagnosis. What we have is reassurance from the neurologists that we saw on Friday and Tuesday that though there were weird events which were observed by nurses and doctors, there were no signs of epileptic events or infantile spasms on the EEG. We've been told not to worry. We've been told by the primary neurologist, who has her own three month old child, to enjoy our child. I normally follow the doctor's advice anyhow, but this is a recommendation I have absolutely committed myself to. She's so precious. We can't take moments with her for granted. I come home every evening, tired or stressed as I may be, and commit to giving Alessandra the 100% that she deserves. We don't have to be in crisis mode - she doesn't have to be sick - it can just be an ordinary day and she is just as deserving of my attention and my best.
No comments:
Post a Comment