So how can I explain to you what it is like to end up in this place? This hospital room miles away from your home and a million miles away from anywhere you have ever wanted to be.
When the medical types told us to expect two weeks before we saw any progress- my brain kicked in overtime. I realized that Brev hadn't eaten in about 3 days- so I pushed for them to place a feeding tube. Now this is something that they absolutely would have done anyway but not until the next day or the day after. I REALLY wanted him getting nutrition because how else could he heal? In goes the tube. They placed what they call an ND tube. It was a very thin tube that went in his nose, down his throat, down to the stomach and beyond, to the duodenum. From the Nose to the Duodenum. ND.
The reason for this is to bypass the stomach. If you don't have a big amount of liquid feed sitting in your stomach you don't get nauseous and you don't throw up and you don't get an aspiration pneumonia. Great in theory. Brev's tube kept slipping up into his stomach because there was a difficulty getting it in just the right place. We did have periods of nausea then. And vomiting. This boy went through about 3 or 4 placements of that tube. Can you even imagine? Melissa stood there every time and held his head and looked him in the eyes and tried her best to make it easier.
We also had special boots on his feet to keep his Achilles' tendon stretched out so that when he was ready to walk again, his feet would be ready.
When I speak of these procedures, they were all brutal. Brevin FOUGHT each and every one. Even when we thought he couldn't move, it would take 4 or 5 adults to hold him down for "procedures". I hated being one of the adults holding him down, I hated seeing him fight and exhaust himself but I did like to see that fight. Because fighting is what Brevin does and that part seemed so normal to me. But seeing him on that bed essentially being tortured was enough to make my head spin and make me feel like I was either going to punch a nurse or throw up all over the place. So what must it have been like for my sister? I don't know. I do know that I would just say to her, "This is going to be awful. It is sister. Just go up there and look at Brev. Look him right in the eyes and just keep looking. Don't watch what they are doing". And she would listen, thank God, because listening isn't really her forte but she was so depleted she would just listen to her sissy. She would go to the head of the bed and she would bend over and she would look at his face and they would endure together. Tears would be streaming down her face and her arms and hands would be shaking but her voice would be there, talking to him, reassuring him. And that's the way it was for every ND placement or manipulation, for the spinal tap, for the central line...for all of it.
Not a single nurse was allowed to give him a bed bath. The nurses did not position him or change his sheets. His mother did that. Every. Single. Time. His mother took care of every single thing that she could do. He had pants and shoes that she would get him in - every day. She would wash his face. Fix his hair.
And then he had that morning where he freaked out.
And then Mrs. Williams, his beloved teacher came to visit
And we saw this:
That. That is a picture of a fading smile. A real and true Brevin smile. Brief, and a bit crooked but it was there. And that lovely woman sat by him and read to him and had a "snowball fight" with him and he smiled and he knew who she was and he remembered how he loves her. I realized that she was there because she had a job to do. Her job was to be the one that walked in and reminded him that there was life going on outside of that room, that he had something to get back to, there were friends waiting, learning to be done and fun to be had. We could not do that as his family. We were too overwhelmed by slogging through each minute. She could do it though, and she did, and I will never, ever forget that. I know what it cost her too, to see him like that because I know that she loves him as well. And she is a mother so she knew that we were in a nightmare.
You see those smiles were just the beginning.
Once he started smiling, he kept smiling.
Smiles were all we had for days but they were really there and they were real and they were pure gold.
He started gaining ground. He had a few words come back. I think the first thing he ever said was a joke of some sort but I would have to verify that with his mother. It would not surprise me in the least. He started twitching fingers, then moving his left arm a bit.
He started being a booger and moving his legs where we did not want them. The movements were slow and jerky but he was doing it.
I will never forget the morning that DR. V came into the room and we told her something that he had done and this, tiny diminutive woman who had hedged her bets in each conversation we had with her, forgot what she was doing and jumped up and down a bit and smiled and laughed out-loud.
Those small things kept happening. So small that we would think we were imagining them. We had to verify with each other that they were indeed there. A twitch here, a skootch there. A smile. A soft, hard earned word. He would tire easily and his moods were becoming a bit unreliable, especially if he was tired.
He got to the point where he was "stable enough" to be transferred out of ICU. That happened on the first night that I left to see my own kids for a bit. Les brought them for a quick visit, we felt that Evelyn really needed to see Brev. That was a hard decision to make, I did not want to freak her out but I was expecting a very protracted recovery and I needed her to see where he was, so she could see where he was going. There are very few 7 year olds who could possibly handle something like this but I knew that she could, I knew it would be hard but I knew that it was harder on her not seeing him and knowing for sure.
I left with my kids and Les to go to Smokewood, to rest a bit and see my kids. They were in dire straights and needed me for a bit. Then the booger got transferred.
On his second night on the new room, I got a call from Melissa at 3am. Brevin was freaking out, having what we will call from now on, "a fit". That was the only way to describe it. He was freaking out, thrashing in bed, pulling at any and all of his lines, and he was screaming repeatedly for Evelyn. He was acting afraid, no, terrified. It seems the steroids had a little something extra to offer. Hallucinations.
Now we would add another med onto the list. It was a good med and worked well. By the time I walked into his room at 4am, he was sound asleep, softly snoring. Melissa was not.
That med worked well for him on the first dose he needed.
The second dose he needed? Well, a medication error happened and he was overdosed.
A new, new room it was then because he would need 24 hours of close cardiac monitoring to check for bad side effects.
And the next day there was a distinct lack of empathy from a Resident. A lapse in patient advocacy from the nursing staff. But one phone call from a certain someone had that all sussed out pretty quickly.
It was around this time when I thought to ask the Neuro Doc- Dr. C what he thought Brevin had. Was it the ADEM or the Encephalitis? It was BOTH! Only Brevin. Only Brevin could get a disease so rare that 8 in a million people get it- at the same time he got Encephalitis! If we had known he was fighting both from the start I am not sure how we would have been able to have hope and faith. Sometimes ignorance is bliss.
Then a repeat EEG and MRI was done. Have any of you ever seen a Neurologist strut? I hear it is something to behold. The EEG was "like a different kid" and the MRI not only showed a completely unaffected spine, and not only did it show no new lesions in his brain, it showed that there was "significant improvement" in lesions seen on the first scan!!!!!!!! This was empirical, unarguable proof that we would get our boy back! This was the fist whiff of the miracle!!!!!!!!
This new, new room though, that would be the place where the Miracle would start to unfold completely.
And I missed nearly every single minute of it.
You see, my two kids had been sick and they were getting sicker. So I took them to an Urgent Care. They both had bronchitis. I could not leave them because by this time I was the only parent in town, Les had to leave Ohio for NJ so he could get back to work.
The next day I was feeling like I had been hit by a Mac Truck, so I too went to Urgent Care. I had pneumonia.
So now the Dillon's would lay about convalescing and hearing tales of Brevin's progress second and third hand. I didn't care though- he was coming back to us and that is all that mattered.
By the time I was able to get back to the hospital and see Brevin, he had been there for 12 days.
Twelve days.
When I walked into his room, there he was, sitting on the bed being....Brevin. An almost completely normal, happy, walking, talking, goofing Brevin. And I nearly passed out as relief flooded my body. You can hear that your nephew is coming back. You can get pictures of him riding a bike in PT, you can have a conversation with him on the phone but, when you have come so close to loosing him and the last thing your eyes saw was this thin shaky boy laying in bed raiding up one weak hand to wave goodbye to his Uncle Les- you just can not truly believe until you SEE something different.
I walked in and crossed the room to sit on the couch. Brev climbed out of bed, smiled and WALKED over to me for a hug. I will confess to pulling him onto my lap and squeezing him very hard as a I cried with relief and joy and absolute love for the child that I was holding. He was with us. We did not loose him. He was walking and talking and making booty jokes and fighting with Liam! He wanted to walk down for ice cream and so we did.
He was still emotionally fragile thanks to the steroids and from the effects of ADEM and Encephalitis. The only way I can describe it is this : Brevin was there and he was functioning at a high level but it was like he was drunk. His speech was slow and slurred at times, he was more klutzy than usual (hard to believe) and he had this sort of stream of consciousness talking that would go on. We knew that those things would fade and that he would be completely normal in time.
After a nice visit and a bedside picnic for the kids...
We went home.
Three hours later we got a call that Brevin would be discharged the next DAY!!!!!
During his time in the new, new room, the question of PT and OT was bantered about. It stared out that he was going to need in-patient PT in Columbus. Then he was going to need outpatient PT there at Akron. Then He was going to be able to do outpatient PT right in Mansfield. We just could not believe what was happening. It was like watching time lapse photography. Every hour of the day brought some improvement.
The next day Brevin was discharged from the hospital. He came home and walked into his house exactly 14 days from the day he was admitted to PICU. he was almost completely back to himself in 14 days. Do you remember? We were told not to expect ANYTHING for 14 days. And in 14 days he was home.
I do not expect anyone to fully process the miracle that this is. I was right there, I saw how bad he got, how close he was to slipping out of this world and out of our lives, and I was there to see his recovery, and I know that it will take me the rest of my life to process what has been given to us.
We stayed for another week to be with him. I could not leave him and Melissa until I was certain things were stable. I am home now, preparing for our first Christmas in Jersey and you can believe I would NOT be here if I was afraid in any way that Brevin was not healed and here for good.
Yesterday he went for his PT evaluation in Mansfield.
He was sent home.
He doesn't need it thank you very much.
You see within 24 hours of being home, he lost even that drunken quality and the extra klutziness. He was running and jumping, doing gymnastics with Ev, he was singling songs, making jokes, saying his ABC's, counting... and it goes on and on.
He has instructions to never, ever put us through that again. He has made a solemn vow. Even more than that, something beautiful was given to us from God, the same boy has been delivered unto us twice. God does not do things half way.
All of those frantic prayers have been answered.
Brevin is here.
I am fundamentally changed by what has happened to my nephew.
And so we celebrate Christmas.
And we celebrate Brevin.
