Stuck in limbo

After one night home to sleep I'm heading back down to Westchester. It feels like Groundhog Day, where every day feels like the day before. 

Time in the hospital moves at a different speed. It's a completely different plain of reality. When you don't go outside for days and are awaken hourly by beeping machines: you're whole biological clock is skewed.

We've been extremely fortunate that in Mr's 7 years, this is our 2nd hospital stay. I don't have anything else to compare it to but I do know that there has to be a better way. 

What it feels like it's too many cooks in the kitchen. Teams of doctors, made up of medical students and specialists are all involved in the care of Mr. It's a great concept in theory however the application is way to jumbled leaving us with no faith and frustrated. 

Most of the time it feels like no one has common sense. I ask questions and get different answers. When I prove a point, they come up with something else. 

In the end they have the power and I've been reduced to "just get it done". I think this is what they are counting on. 

There has to be something else, a patient  centered approach where doctors actually listen and realize that the expert of the child is in fact

the parent. 

I understand that the medical field has to use data from the "in most cases" scenario but for a child like Mr. He isn't "most cases". 

But we are left at their mercy. For three weeks we have been here and still have no idea when we can go home. Our choices are limited. Do we leave and go someplace else and start the whole process all over? Do i cause such a fit that we are penalized and put at the bottom of the list? 

My resources are taxed and my emotional compass is broken. I've never felt so powerless, so small. 

Thrown a curve ball

7 days, 7 nights we've been here. I feel like I am slowly losing my mind. No sleep, my child in pain, and a medical system that seems to lack common sense. To say I'm at my wits end is an under statement. Actually I am really afraid to put it out there to the universe, because it will most likely prove me wrong. "So you think a week is bad, huh? How about another" - says the universe to remind me that I have no control over anything.... ever.

Being a parent is a constant learning curve. Being a parent of a child with special needs is a whole other university.

For the most part, Mr. has been a very healthy child. Apart from his developmental delay, he has been happy and healthy up until this past year. The onset of seizures has really thrown him and us for a loop! So on came the medication, and out went his eating habits. He slowly dwindled to primarily living off of liquid nutritional supplements. He lost a few pounds.

Last week the seizures began increasing, and he then stopped eating and taking his medication completely. This of course, brought on more seizures. It was awful. His poor little body convulsing in clusters of seizures 30-45 seconds long, one right after the other for 10 to 15 minutes.

Down to the children's hospital we went to see if they could help us.

7 days, 7 nights we are still here.

Kids like Mr, aren't easy. You can't reason with them and say "listen, start eating and taking your meds and we are out of here". No one can tell us for sure about anything and since Mr. isn't talking we have to guess.

The previous medications are not doing the trick, what they are getting into him now is through IV, but we can't take the IV home with us, and quite frankly I don't want to live here. So they offer us solutions. The main solution is a g-tube. A small tube that they insert into his stomach in which we can pass medication and food directly to him. Sounds simple enough... but not really.

I know plenty of families and children that have a g-tube in place, and it has been helpful, even life saving. Its a hump though, a big deal that we have to get past. Its the concept that its one more thing that Mr. has to go through. Its the concept that his nutritional consumption will be through the g-tube. It will mean a whole new routine for the family. It will mean feeding times, and medical appointments and tubes, and syringes and fluids. It brings the care of Mr. to a different level.

Of course the idea of surgery and cutting a hole into your child is never one that parents want to come upon willingly. Doctors offer other solutions, one that involves putting a tube down his nose, the back of his throat and into his stomach. I'm not sure Mr. could handle it. I'm not sure I could handle it.

So here we are, at a cross roads if you will. I hate seeing him in pain. I hate seeing him suffer. I hate being here, and the possibility of just going home without a long term solution scares the shit out of me.

They don't teach you these things in college, there is no "G-tube for dummies" book. And there isn't a definite answer to anything when it comes to Mr. There never has been. So I guess why would this be different?  We are making the best decisions with the most amount of information and input as we can. We are just trusting and learning lessons along the way.