So the echo went well. I was still a little frusterated as the doctor kept talking about how Dominic was sick and snotty. He was not! Dominic has a noisy airway and they seem to conclude that this means he is sick and they wouldn't listen to me saying he is fine....this is normal. When the echo was done with I came back into the room and the doctor tells me as if I didn't know "He was fine....as soon as he was sedated the noisy breathing stopped" I really felt like saying "told you so". Anyway they said that his function looks great, no leaky valves or anything. She did say though that they probably wouldn't close the fenestration (the hole they left in the conduit) for another year or two. I was under the impression that it would only be at 6-12 months post op. I don't know why she was saying different, it is possible that she didn't really know. I found that they really didn't know much about single ventricle kids up on the sedation ward. They were very interested in Dominic though!
It looks like Dominic's brain stem test will be at the London Children's hospital in February. This is the test where they are checking to see if what Dominic is hearing is getting to his brain. I have now been introduced to another medical issue that causes speech problems and that is called Apraxia. It is where the person knows what they want to say but either the one part of the brain is damaged or not developed correctly and they have a hard time saying what they want to. The description sound very similar to Dominic and the speech therapists that work with him have said that it is a possiblity when I mentioned it but they can not diagnose it. I will be asking the pediatrician. This week we go to London for a consult with the ENT who will be doing the brian stem test, I may ask him about it aswell.
My family doctor did say that he would fill out the form for the disability tax benefit but he was not that promising and he said for walking and speech which would mean that it wouldn't even have been any problem until probably two when these things actually become issues. From what all the other heart moms with single ventricle babies are saying, Dominic should have been getting this since he was born. I am going to send the doctor a note and explain why we need it and what to write on the form. I really hope he gets it filled out soon. It would be nice to have it all done and some money to us before christmas.
Anyway things have been crazy busy around here. Dominic is getting his holter monitor on Friday at 2:30 so he will have to wear it for halloween, I don't know what he will think about this. I guess we will see! I changed the appointment because I didn't want him to miss any school.
Thank for checking in....I will keep you up to date on Dominic's upcoming appointments.
Jenaia
Saturday, October 25, 2008
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
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
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