Appointments! Nix! Nix!!

Appointments drive me crazy. I mean, they are really starting to drive me nuts. I cancel as many of them as I feel I can, because I can't help but feel that they are, for the most part, useless.

I mean, I won't ever cancel an audiologist appointment. That has a definite purpose, to check Joel's hearing, and if he needs hearing aids that will bring him a big improvement in his quality of life. I'm going in to his neurologist, because I have some questions and discussion that will just be better "in person" instead of trying to do it all on the phone. What I hate about that appointment is that I have to bring Joel to it. That part is pretty pointless. Unlikely that she'll actually see any of the stuff I'm talking about in the small half an hour window we are there. Still, I gotta dress him up and haul him out there, interrupting feeding schedules and causing him the misery of car seat and snow suit and all.

I'm developing a bad attitude about it all. Today the endocrinologist's office called to try and change Joel's appointment to 1pm from 11:30. Thing is, I managed to get two appointments in one day. Neurology at 8:50 and then the endo appointment. At least there are two in one day so it's one trip, though we'll have a two hour wait between appointments and I'll have to bring along his noon meal and feed it to him while we wait between appointments. But 1pm??? AAAAAGH. Seriously, now we are supposed to hang around for three and a half hours??? Or go home and then come back later?? This feels nuts, I feel nuts!!! I am so, so, so tired of appointments, appointments, appointments and for what?? Ask a few questions, let Joel get prodded, agree that everything is same-same and then go home.

So I wasn't too crazy about the time change and the receptionist is going to get back to me. If she tells me that 1pm is the only slot, I'm NOT GOING IN FOR IT! Seriously, the answer is NO. Just phone me at home and ask your questions.

I have an appointment with the metabolic doctor not quite two weeks from now. Know what? I'm thinking of cancelling that one too. Frustrating thing is, the ONE TIME I REALLY WANT to see him is when we are in the hospital. That's when he could help me out by discussing with me how Joel's PBD could be affecting the situation/treatment/symptoms, etc, etc. But he doesn't show up then because he's too busy and he knows other docs are "taking care" of the situation. Well guess what? I'm TOO BUSY just surviving to come into another appointment where we just chat about how things are going and I am ONCE AGAIN asked if I have enough respite/support.

This is what me POCIC's are talking about when we say "THE SYSTEM." (How do you like the acronym? Parents of Chronically Ill Children.) The fact that we are supposed to keep a plethora of appointments the large percentage of which do not really assists us, other than making sure we can still recognize the doctor's face is just one of those things that drive us (or maybe it's just me!) stark raving bonkers. The fact that "the system" keeps my doctors too busy to come in and see us when we really need them, which is when we are in hospital. And when everything is going well, when I really just want to enjoy the good times we are having, THEN they want me to come in and see them.

Just a little rant, to get it out of my system. As time goes on, appointments get more and more crazy-making. Because when we are well, we DON'T want to see the hospital or doctors. Because as time goes on, it (time) also becomes more and more valuable. Because as Joel gets worse, appointments are harder and harder to keep.

So, to try and end on a more positive note, let me tell you that the palliative care team will come into my home for a home visit. The doctors or nurse will come in to my home if there is any problem or concern with Joel. Pretty wonderfully old fashioned. And such a huge relief.