Tuesday morning, Cannon finally opened his eyes and was alert for several minutes. He was disoriented but we knew he was somewhat back to himself when the first thing he said was, “You cannot fathom how thirsty I am!” The nurse thought that was the funniest statement coming from a kid. And after only a few minutes, he was back asleep.
He spent most of the morning uncomfortable. He was thirsty, hungry, he had a headache and was irritable. He had an MRI scheduled for early in the afternoon and would have to be fully sedated so they weren’t allowing him any food or water and medications didn’t seem to be touching the pain.
We explained to him what the MRI would be like and I could sense worry in his voice. And he said to me, “Isn’t this what Clyde’s dad died of?” His friend’s dad had passed away earlier last year from a stroke and Cannon had confused that with a seizure. (What Cannon had picked up on is the fact that years of high blood pressure had led to the man’s stroke.) I was grateful to have cleared up that misunderstanding and hopefully put his mind at ease.
By afternoon, his pain was unbearable and he was headed off to his MRI. It felt like deja vu wheeling a crying kid through the hallways of the hospital.
After his comprehensive MRI scan, we finally got some answers. His MRI showed severe swelling on his brain (PRES). Hence the hallucinations, inability to walk, severe headaches and so forth. And they also diagnosed him with a Post-infectious glomerulonephritis – a kidney disease occurring after some type of bacterial infection. They figure he probably had some type of infection prior and this was his body’s reaction to fighting that infection – and unfortunately, he went into worse case scenario with every step his body tried to fight.
They gave him a one-time antibiotic shot and they told us with that shot, we would start to see his kidneys improve, which would mean his blood pressure would lower, which means the swelling in his head would go down. It might as well have been a magic shot! They started talking about moving us out of the ICU and things really started looking up! (Even though he was still pretty miserable with his symptoms and that one time shot was a doozy. I suppose it would have been more magical had they been able to put it in one of his many IV lines.)
We were grateful for the diagnosis – but if I’m being honest, I didn’t feel as much relief as I thought I would. We still had so many questions, several things didn’t make sense with the timing of his symptoms. But they were confident and I wasn’t a doctor. And truthfully Christmas eve was just one week away and I was excited at the prospect of coming home and recovering.
But his recovery was slow and no doctor anticipated that.
By Wednesday, his pain was much more manageable but he continued to suffer from headaches. He started physical therapy to start walking again which was labored. He was receiving blood pressure medication through an IV and even then, his blood pressure wasn’t stable – and they told us, in order to get out of the ICU, he would have to get off the intravenous medication. There’s nothing like knowing our goal and not being able to do a single thing to reach that goal!
Cannon grew bored. We grew weary. We were splitting time between the hospital and home and work, trying to keep it all together and it took a toll emotionally.
Hunter and Bennett were able to visit Wednesday afternoon (Briggs was too young) and it was just the pick-me-up Cannon needed. They stayed all afternoon and into the evening playing video games, grabbing food and watching Survivor.
His blood pressure didn’t improve. His kidneys didn’t improve. And the doctors were perplexed.
Thursday rolled around and once again we were hopeful of breaking free. They took him off the intravenous medication and started blood pressure medication in pill form and we were doing a happy dance. But they wanted to monitor him for another 24 hours in ICU to make sure the medication held. This day was hard – Cannon was acting much more like himself and was having a hard time understanding why he still had to be in the hospital hooked up to so many machines. He was sad to have missed – in his mind – the biggest and best week of school, the week before Christmas with all the class parties and festivities.
His blood pressure on the pill medication wasn’t stable and his 24 hour monitoring in ICU took longer. Originally, they thought we would be able to be discharge from ICU but it became clear to us, that wasn’t an option on the table anymore – instead, Friday evening he was moved out of ICU and on to the Peds floor. Which I thought would feel better than it did. It was discouraging more than anything. ICU – doctors are constantly present and even if it doesn’t speed up recovery, it felt a little more productive.
On the peds floor, we just played the wait and see game and we just watched the hours pass. We watched his blood pressure carefully and repeatedly received emergency doses when it remained too high. They added a medication patch to administer medication in addition to the pills he was taking. It really felt like we were chasing an unattainable number.
Cannon played every video game and watched every movie he was interested in. We played games (which were great, until it made his head hurt). Hunter and Bennett came to visit again. We got permission to take Cannon out to the lobby where he could see Briggs for the first time in 5 days and his friend Avery got to tag along. His ER nurses who worked with him for hours on that first day paid him a visit. They said it’s not very often kids are there long enough for them to see them again but when they reported to work and saw he was still admitted they came and found him. They said in all their combined years of working, they have never seen a kid with blood pressure as high as his was when he was admitted.
We had one overnight nurse we had to ask not to be assigned to us again because he struggled so much with caring for Cannon (which hadn’t been our experience up to that point). His teachers came to see him – which was a tender visit. My sister-in-law came and played games with him so we could go to church for our Christmas service. So many friends and neighbors stopped by to check in on us.
And finally…on Sunday morning our doctor made the rounds and let us know she was leaving for Christmas vacation and was going to discharge us by the end of the day if he could remain stable for the day. He hadn’t been stable all week but we were desperately hopeful. Halfway through the day, they had to administer emergency medication and I thought our ticket to leave was torn from our hands. But much to my surprise, we got the Christmas miracle we had prayer for and they ordered our discharge. And when they did the final blood pressure reading and it was higher than the level at which we needed to return to the hospital…I’m not sure why, but they still let us leave. (I’m sure they were trying to discharge anybody they could prior to Christmas and for that we were grateful!)
And you better believe we made a quick exit so they couldn’t change their minds!
