Onward and Upward

No dice.

We tried a capping trial today and Christian wasn't a fan. He seemed like he started to panic a bit. I wasn't surprised really because I didn't feel he was ready to cap yet. He's only been on the PMV for a week and only nonstop for about four days now. I thought it was a little ambitious to cap quite yet but I was willing to give it a try. I know he needs to strengthen those breathing muscles again and he'll be able to do that with the PMV. We'll try a few seconds every day and then a few minutes and then a few hours...you get the idea.

I'm not terribly disappointed by the capping trial. I would hate for him to be stressed out and agitated over capping because that could hold back his recovery and progress in other areas. So I'm not fighting that battle. Besides, he did a lot of really cool stuff today and he's had a lot of new developments in the last 5 days or so. In fact, he's tolerating his feedings a lot better and not throwing up as much. This has allowed us to shorten his feeds a bit, which allows for more time during the day where he's NOT hooked to a feeding pump. This is our playtime!

During PT this morning Christian was having tummy time on the ball and was face down. We were lifting his head for stretches and neck strengthening. If you let go of his gargantuan head, it usually plops right down just like a newborn. He even tends to throw it forward, which adds more force to the equation. Well today, while holding his head up, I let go and he slowly lowered his head and laid it down on the ball with the most head control I'd seen yet! It was very exciting. Christian also did some noticeable tracking. Not the "it's just in my head" tracking, but actual tracking. This happens when his eyes follow a toy or a light. I'm not sure he'll track to those boring miniature flash light the doctors always use, but he certainly responds to his bright yellow Spongebob.


It's also really exciting to see Christian so feisty. He wasn't all too cooperative in PT, but you could really see him "fighting" them with his little scowl and little growl if he didn't like something. He used to fight them with his tone sometimes, but he would really just lay there with no facial expression. Now you can really tell he's pissed and he's going to make sure everyone knows it. I love it! I don't care what emotion or communication he's showing. I'll take it.


I also spoke with the doctor's assistant today about possible discharge next week. He generically went over the discharge plan..."Well, the discharge plan is pending your [trach] training and long term health care coverage enrollment..."


So I said, "I've already been signed off on all my trach training and we're planning to get discharged using our primary insurance until it rolls over."


He said that sounded fine, he would confirm with the social worker - who's already on board with this - and we could commit to a discharge date. Sweet. If things go as planned, we should be discharged a week from Wednesday. Hallelujah!


The only thing I'm bummed about is the physical therapy. I spoke with the early intervention department (they schedule in home therapy for children with special needs) and she asked about how much therapy Christian is receiving. I told her five days a week and she told me not to expect that. It would probably only be more like once a week. Are you kidding me? So I told her that's fine, I'd use my primary insurance to pay for more. She kind of gave me the run around about how I could only use one or the other and blah blah blah. Budget cuts and more blah blah blah.


But, you know what...I'm not hearing her. I'm getting what my son needs and that's final. She suggested I just not tell the state run insurance that I'm using my primary insurance for supplemental therapy. Why is this such a big deal? Shouldn't the state be happy someone else is picking up the slack for their inadequacies and underfunding? I know this talk of insurance is just absolutely fascinating for you all but in my neck of the woods - pretty much every neck of the woods - this is called a clusterf*** and it's become part of my life. Am I going to cry about this? No. I don't understand it enough to cry about it. Am I going to get what I need for Christian? You betcha.

On another note, what I would like everyone that has to deal with us on a daily basis - more or less - to know is that our family has a new normal now. We are trying to take pieces of our old life and mesh it with pieces of our new life and it may not be what you expect or what you would even do if you were in our situation. But you aren't in our situation so you have no idea how it feels to have your child almost die and literally be brought back to life, not in one second, but over the span of many weeks, months, and years. I'm not going to ask for patience or understanding because this is the way it is so you are either along for the ride or you're not. If we fail to meet your expectations or fail to act the way you think we should act, I make no apologies. We're doing what we think is best for our children with the circumstances provided. We're doing the very best we know how to and that's all we can do. So welcome to our new normal.

Onward and upward.