Friday, October 10, 2008

A Stressful week of appointments!

Tuesday we had speech in the morning and the family doctor in the afternoon. Wednesday we had the scheduled sedated echo that didn't happen and Thursday speech again. Speech went fine both times, actually he did really well. On Tuesday he went without me and he was fine. I told him that I wasn't going to be coming in and he seemed well prepared for that.

The echo didn't happen because Dominic was as fussy as possible and coughing like crazy with a runny nose. He does seem to have a bit of a cold that was not bad until that morning. He also regularly coughs at night and a lot in the morning and needs a drink the instant he wakes up. He was not allowed to have a drink because of the sedation so his cough was bad. They listen to his chest and said there was no way they felt safe sedating them. I would not want him sedated if it wasn't safe, but even the nurse practitioner agreed that the way he sounded was the way he sounded in July and he was not sick then. He has a very noisy upper airway. Since they all saw that this is his norm they decided the echo would not be done in the echo labs at the clinic and want to do it upstairs. So they send up for a "Pre-Op" appointment instead to prepare us for a stronger sedation with an anethetist present. I don't like the Pre-OP word. Anyway this new echo appointment is October 20th. They also want Dominic to wear a holter monitor for 24 hours. I don't actually know much about these or why they are doing it on Dominic. Maybe you other heart moms can help me out here? Anyway so we go to get that on the 23rd and bring it back on the 24th. So it looks like 3 trips to Hamilton and back that week plus speech twice again.

This leads me to the appointment we had with the family doctor on Tuesday. I had brought in the forms for the disability tax benefit for Dominic hoping he would fill them out and we would get some back pay an everything. He basically said to me that just because he has a speech delay does not meen he is disabled....actually this is exactly what he said. He added...."Lots of kids have speech delays". I was quiet annoyed because Dominic's is not typical and not going to go away anytime too soon. Not only that but it is not just the speech delay. If we can have anywhere from 2-5 appointments in a week, how am I suppose to hold down a full time job, let alone a part time one. As far as I am concerned if you can't just go to work because of your child then you should be qualified. He told me that he can't lie on the form or he will lose his liscence. This bothered me too, because I am an honest person and he should know that. I was not asking him to lie. Anyway I did end up getting him to say that maybe he will be okay to get it if they fill it out saying he is significantly restricted in speech and walking. Basically they need to either be Markedly restricted in one area or significantly in 2 areas. He said we could use walking as well because Dominic does not have the energy to walk any sort of distance. I don't really care how they fill it out, I just really think we should be getting it and it frusterated me after the week I had and the week I will have in two weeks, that he would try to convince me we won't qualify.

Anyway I am feeling a huge reminder of the Dominic's heart defects and feeling a little stressed about it in the pit of my tummy. I don't know if it is worry with these tests coming up or worry that I can't afford all of this. 3 trips to Mac is expensive. I can hardly afford to stay home. I really hope we can get the benefit.

Wow blogs are great for venting!

Thanks for reading!

Jenaia

3 comments:

Retrobaby said...

Holter monitors are an basically and ECG that is left on for 24 hours and you press this button every time there is a symptom or when medication is taken. Kaitlyn never seemed to mind them. However make sure they give you some stuff to remove the sticky residue left behind from all the tape they use, it's so hard to get off with soap and water!!

I'm always thinking of you and I entirely feel your pain. Choosing to stay at home with Kaity until she went to school was so tough financially, but with all the appointments it's not worth the hastle. Hang in there, you're doing a great job!!

Heather & Family said...

Drew had his first holter monitoring in May. It was relatively stress-free for him. I would suggest a hoodie with a big pocket in the front to hold the gear. And I second the suggestion of the sticky residue remover pads, get lots they are VERY sticky. All I can do is send big hugs and tell you that you are a strong and wonderful mother!!!! Dominic is as lucky to have you as you are to have him :)

ChristophersHeart said...

http://www.childrenshospital.org/clinicalservices/Site753/mainpageS753P0.html

This link is great at explaining it. We haven't had one for Christopher yet but they did talk about it.

You are doing awesome, hang in there! Hopefully we can meet up at one of your Hamilton trips in the next few weeks
Wendy