Jack is in the Hospital... Again

Having a special needs and medically fragile kiddo is like living life on a roller coaster. Not one of those mild, mostly for kids rides you find at Disney but a rip-roaring, death defying ride that you can only find one of in the world because they are too scary to share with the masses. One minute everything is fine, you are climbing slowly, the wind is in your hair and you are optimistic about the ride. Then before you know it your entire world is upside down and the only thing between you and impending doom is a seat belt you are positive has not been safety tested since the early 90s. While that sounds overly dramatic it’s true.

It all began on Thursday January 2nd. Our sweet sweet vacation had come to an end and we were back to the real world. Since Christmas Day Jack had been off of his vent during all waking hours and he was doing it like a boss. However, on Thursday his nurse reported that he didn’t have the best day, he was not himself and slept on the vent for most of the day. When we were all settled that evening he seemed sleepy but okay and we were able to take him off the vent for 4 hours. We chalked it up to the post vacation blues that we were all feeling.

Friday was a better day and passed with relative ease. However, while waiting for the nurse to check in that night Josh noted that Jack’s heart rate was abnormally high while he slept. He asked the nurse to keep an eye on it and on Saturday morning she reported that it normalized over night and that he had a good sleep. The rest of Saturday morning and early afternoon was great, he had an awesome bath, played, cuddled and remained off of the vent.

During his 1 o’clock nap/feeding he threw up. While throwing up is nothing out of the ordinary for Jack his heart rate went sky high. We got him calmed down but his heart rate remained higher than normal for the rest of the day. He also required the support of his vent for the remainder of the day. We tried a couple of times to take him off but he made it clear that He wanted no part of that. We went to bed knowing that this could very well be the last real rest we would get for days and we were right.

As I descended the stairs at 6AM on Sunday morning I heard the all too familiar and gut wrenching sound of the oxygen machine. This humming hunk of junk is normally tucked away in the basement because Jack does not require the support of oxygen. But here it was. Attached to my son, humming it’s ominous hum. Our nurse reported that his heart rate had been high throughout the night and that he was unable to maintain his oxygen saturation so she had to plug him in to give him that extra support. We had planned to make a trip to see Papa Ray all together as a family but it was clear at this point that Jack would not be attending. We called our home care team and the doctor advised that we start his breathing treatments and keep him on the vent with the oxygen and remain at home. We decided that Josh would stay home with him and that the two of them would partake in cuddles and a bad movie marathon.

Rory and I returned home at 4PM. Jack looked terrible. It is hard to describe but it looked as if Ron Weasley had been by and used the deluminator to remove all of the light from our boy’s eyes. They were glossy and void of his usual twinkle. We called the home care team once more and made some setting changes to his vent to provide him with more support but it was just not bringing him back. We decided that we were no longer comfortable carrying on at home so Jack and I arrived at the ER around 7PM. They quickly ran all of the usual tests and we were left to wait for the results. The only place Jack would be calm and rest was on my chest so there we sat, him asleep and me staring blankly at the wall.

The test results were in and they were negative for flu, pneumonia and RSV. This is good/bad news. While I would be devastated if he had any of those things, knowing there is something wrong but not knowing what exactly is it’s own brand of hell. We were admitted to the ICU around 2AM. We were both able to sneak in a 2 hour nap before they were in to collect more specimens and start him on a round of steroids. Of course this meant that they had to start an IV in his tiny little hand which is always traumatizing for everyone involved.

Josh tagged me out late in the afternoon and they were were moved to a more long term care room to ride the rest of this out. Jack was in better spirits by the early evening, Josh was even able to squeeze 2 hours of play time out of him before he wore himself out. I’m not going to lie to you guys, this has been a rough one for us. It had this unexplainable eerie feeling to it, so to see Jack smile for the first time it what felt like forever was a huge relief.

As I sit here watching the sun rise over the city with my bright orange security bracelet and my sweet sleeping babe I know that everything is going to be a-okay. We know now that he has a viral infection that is causing his trouble breathing and we are hoping that those steroids are kicking the ass of this mystery culprit. We have seen major improvements over the last few days and we are hoping we will all be home together again soon.

Whatever is next on this roller coaster ride we call life we will handle it just as we have before, one breath at a time. Aint nothing to it but to do it right!?

B