On Believing.....Part 1

I haven't been posting here and many of you know why. We left our home in Jersey to head inland to Ohio- towards Grandma's house, family, turkey and good times. What we found was all of that for awhile and then we descended into what can only be called hell.  Finally, a day short of an entire month I walked back into my own home, all of the players in my life safe and accounted for.
And yes, this is all about my nephew Brevin, absolute terror, sickness, hospitals, heroes and miracles. And it will be long. And scary. And sappy. And serious.

In October we made a surprise visit home to Ohio for Halloween. Brevin had pneumonia at the time but he was ok. Just a kid being treated for pneumonia. We had our Halloween and came home but Brev kept getting sick. First the pneumonia, then "something viral", then an ear infection. On Thanksgiving Day he took his last dose of what had been a month long course of antibiotics.
The Dillons arrived on scene Nov 18 and all things were good. Brev was recovered. It was the holiday and we were good. The day before Thanksgiving, the kids were playing and all was normal. So normal, that looking back it seems eerie in a way.
On Thanksgiving, the adults looked at each other strange because Brevin, the kid that NEVER wants to rest or sleep, made an announcement and walked himself to bed for a nap. This was, in and of itself, strange but we all thought that the Dillon kids had worn him out and that he might be getting sick again as is his wont this time of year. So he napped. Then he woke up and had some dinner. There was an incident where a drink just kind of slipped out of his hand - again very Brevin in a way.

And let me just stop the story here. I can not keep injecting the things that we, the adults in his life were thinking along the way. At almost every step there was some kind of reasoning that took place- something that we (AND THE DOCTORS HE WAS SEEING) could say was happening other than what was really happening. Believe me, I have gone over and over the events in my head and I do not think that there was ever something different we could have done at the time, with the information and symptoms that we had. I think his mother did a superb job at getting him the care he needed. Every adult in his life has had some very dark and recriminating thoughts about how this all went down. At the end of the day however, we did what we could at the time.

Sometime late on Thanksgiving he complained of a headache. That was relieved by Motrin. He had a fever, nothing too high 100.5 at the highest. He was sleeping alot.

The day after Thanksgiving (Friday) his Mom went to work and he was with me for a short time. Again the headache relieved by Motrin, the fever that wasn't too high (100.1) and some sleepiness. I treated him and left to go to see some other family in Columbus. He spent the rest of the day sleeping and waking up easily. Eating very little, drinking very little but arousable and coherent when awoken. We all thought he was just getting a virus again. Kids sleep when they are sick. Kids stop eating when they are sick. Those things happen routinely with sick kids.

Melissa came home in the evening. Brevin was sleeping. He woke up, ate something, walked to the bathroom, he was talking to her. Two hours later when she went to check on him, he was very difficult to arouse, he had lost some control of his body functions, he was unable to talk, he vomited.
She took him right to the emergency room. Every test that they could think of at the time was ran and came back normal. Well he had an elevated white blood count that leads you to think infection but we "knew" that already. His heartrate was elevated and that was a concern. He was a bit wonky and sleepy. The iv fluids they gave him slowed his heart rate and he seemed to perk up a bit. The ER DOC concluded that he had a build up of the antibiotics in his system, that iv fluids would help and that he would be back to school on Monday.

Saturday we had a kid that was even worse. He was very sleepy. He slept all of the time unless woken to drink or pee. He was still talking to us but only sometimes. He would wake up and stare at us, then go back to sleep. A visit to his regular Doc took place at his mommy's insistence (to the office folks). He had no temp. He would wake up and talk appropriately to the Doc. She concluded that we were dealing with some Sepsis but we were still waiting on blood cultures that had been drawn the previous day. Two injections of antibiotics and we went back home. He still had a fever but nothing too serious. He was still able to drink when we asked him to. He was still talking but he did have times when he didn't answer us. The Doc told us he would perk up in the evening and be better by the next day. He DID perk up a bit and we all thought he was on the upswing.

Sunday morning. He was even worse. Very difficult to arouse. No drinking. No talking. He would only keep his eyes open for a few seconds before falling back to "sleep". My sister had enough. She knew that it was time to get serious. She called his Doc and a plan was made to take him to Akron Children's Hospital.

Sunday Night: 6 hours in the ER. CT scan was negative. Any and all blood tests were negative. The doctors were perplexed. But we happened to get just the right Doctor- she just would not let things rest. I do remember that at one point she was talking about how they didn't know what was happening...my sister interrupted her and said, " I swear to GOD if you try to send us home, I will come over this bed at you. There is something wrong with my son and YOU need to find out what it is and make it better". And they did. That Doctor got the idea that she needed to see Brev try to walk. When he did, she saw that his right leg was dragging and very weak. This made her think brain/spinal cord. An MRI was ordered. Something was seen. An MRI with Contrast was ordered.
Then they kind of "knew".

And that was when we fell into hell.