Friday, September 17, 2010

I'm tired.

I'm not referring to physically, per se, but a mental and emotional state.

Since starting school, with his modified schedule in place (attending only M, W and F's) and the first full week of school being just this week, we're seeing a change in Wyatt. He's tired, his body is more tired. His pulse-ox machine is alarming much more due to his heart rate consistently dropping too low. His body hurts more. He's needing to be carried throughout our home more often than not. He's able to sit in his wheelchair, but the size of our home is just too restricted for him to actually move about freely, without running into and over everything in his way. Which he does do while maneuvering to the back of the house to the ramp each day. He feels very accomplished to make it through the rooms of our home without running over, into or through anything...it's much like a game. Thankfully, he thoroughly enjoys games of every kind!

We battle through these changing circumstances, as we always do, but it's hard to see changes. There tends to be a limit on the number of days that I can put on my happy face and live in my own little bubble of slight denial before I run smack into the wall of reality.

I called urology today to follow up on our visit with them in July. I had dropped off paperwork for the doctor in early August, while visiting for a different appointment, and had not heard back about their thoughts and any next steps that were necessary for the situation. I received a call back from the office fairly quickly today. The person on the other end was perkily asking when I had dropped off the paperwork and to whom, because they had no record of receiving it.

Oh, yes. She was not joking. And she didn't seem even half as concerned as I was becoming.

They had lost the paperwork that was to be "so important" for the doctor to decide what route to take next. This paperwork, which we put a lot of time and energy into. I'm very frustrated and wanted to scream....but all we can do is laugh in our annoyed state. This is our life, after all. We can't expect things to go as planned. It's just how we roll...

Along with the frustratingly laughable event of  losing the important papers, we have yet to receive a phone call to discuss the long awaited, much anticipated testing results from our trip to see Dr. S. It's been nearly 5 weeks since we received these results and promptly contacted our neurologist (who also received his own copy of results). And we have yet to talk about the findings with Wyatt's leading doctor. And that's certainly not for the lack of trying on our part.

After conducting my own research and relying on the knowledge of fellow Mothers, I'm 98% sure I understand what the results are showing. But I'm frustrated that after 5 phone calls (possibly 6...I don't clearly recall) to the neurologist asking to speak to him, that we have yet to get a phone call back. I've offered the idea of just making an appointment for a Q&A to make it more convienant, we've had questions about school and Wyatt's health plan/IEP, I've asked if we should just make an appointment to travel back to see Dr. S again....but I have not gotten any response other than his assistant telling me "the doctor said he will call you."

When?!

I know it doesn't really matter what the results say. It's not going to change the way we're caring for him. It's not going to take away his pain. It's not going to make his body do what it's supposed to and when. But we just want to talk about it with the doctor that we know and who knows us, and most importantly, Wyatt. Are we asking for too much?

Today I'm tired of wondering, worrying and stressing.

I'm tired.
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