Saturday, February 7, 2009

And the centre ring...

Queue the corny circus music, I am about to leap through hoops. At least that is how this feels.

I was almost in tears Friday morning after talking with Kristina, Dr. Dobbs' nurse. I know that she can't give me much information until Matthew is seen, but it makes it hard to plan. Seems that the first appointment will or will not be an informational exam, will or will not be the start of serial casting, will or will not be a pre-surgery appointment. This first appointment will or will not be the start of a series of appointments that may or may not be every week for as long as it takes. I know that they can not say for sure until they actually have Matthew's foot in hand (literally) but it makes things so hard.

I started to worry about all of this. What will I do if they need to serial cast him for 4-6 weeks? Would I actually fly back weekly at a cost of $1000 just for flights every week? Not to mention at least one night stay as the flights from here to there are crappy and take a whole day. Or would I stay there with Matthew? Leaving Ryan? Ship him off to Vernon for 4-6 weeks where he would most likely be so sad to be away from Mommy, Daddy, Matthew, his house and all his friends? Do I take both boys with me and live there for 4-6 weeks? The thoughts had me close to tears. Things were going fast with very little information to calm my brain.

Then, in the afternoon, I got a call back from Alberta Health Care out of Canada care department. All of a sudden, this fast train I was on derailed right in front of a circus tent. Seems that in order to get out of Canada care, there are many forms and many hoops to jump through just to get the chance for a committee to sit down and look through the information. They will then decide if this treatment outside of Canada is deemed necessary and not found in Canada. Then I will be able to access funds. How much and for what, I have no idea. Hoping the forms will explain that better. Hoping they arrive early next week.

Some of the hoops to jump through...

I need a letter from his current surgeon stating that he needs the care of the doctor in the states. Not sure why but this feels like a big hurdle. I have to go to his surgeon of six years and say "ya know, I think things are going nowhere with you, I want to see this other guy and you need to write a letter saying so" Feels awkward... but is a must. Will have to make an appointment.

I need to send Matthew's health history. The lady on the phone said "only send what is relevent to this health issue" I chuckled. His first appointment was at 4 days old and he is now 6 years old. His file at the children's is now over an inch thick. How do I get a copy of that and send it?

And the worst part, they don't meet again until March 18. So here we sit, waiting...


MamaJenn said...

{hug} What a process!
I am sure thought that his current surgeon will understand that you as his mom would demand that every possible solution be looked at. Hopefully. Best of luck with that convo.

Me said...

Hmm...not sure what the system in Canada is, but if you manage to get that referral and come to the states and need to stay somewhere for 4 weeks, most cities have Ronald McDonald Homes available for families of patients who are traveling. I haven't ever looked into those b4 so you may have to do some research.

Good luck!

Sara said...

I do not envy you... but I am grateful that it is you that is this boy's mom, because I know you will take care of all this in order to get him better. I pray that things go as smoothly as possible with all of it. HUGS!!!!

Allie said...

I wish you the best of luck with getting out to see Dr. Dobbs and getting your son's foot corrected. I'll be thinking of you as Riley progresses in her treatment. I hope things work out for your family and you aren't seperated from you younger son for too long!

tara @ kidz said...

Motherhood is not for the weary, that's for sure. Then throw disabilities in there, and it just gets all the more complicated. But thankfully you're a strong mom and up to the challenge. He is lucky to have you!

Sue said...

Oh, Jo-Ann! This is the EXACT same boat we were in with Grace this past August (except Canada wasn't involved). :) It went SO fast, and when that happens I just crash internally. Dr. Morcuende wanted me to come to Iowa IMMEDIATELY to treat Grace (as in, "Can you come in 3 days to start treatment?" THREE DAYS??!!) -- Iowa! From NJ! -- we would have to stay there for about 4-6 weeks, I have a son who was just about ready to turn 6 and start school ... I think I cried every day! I can't tell you how much I completely understand what you're feeling.

But your situation is far more complicated -- it's hard to believe you basically need permission to seek treatment elsewhere! How horribly frustrating. A few thoughts:

- Can you just buck the Canadian system and do your own thing? I guess you won't get funding, but can you just work outside of that and do your own thing?

- Have you looked into Angel Flights? Pilots donate their time for FREE to fly kids for medical purposes. That would save you mega-bucks.

- Echoing what "Me" said -- Ronald McDonald houses are everywhere, and cheap.

- Just looking ahead a bit, when (yes, WHEN) you get there and Dr. Dobbs says he wants to start casting, ask to do it THAT DAY. Really -- why wait any longer? You're there, so just do it -- and be prepared to have him casted from the start. We did that with Grace -- I had it in my head that she would start casting that very first visit and our dr. agreed -- it was the best decision.

Just hang in there and take one day at a time -- seriously. I know it sounds like a cliche, but it's the only way you will be able to get through it. That and lots of prayer and support. :)

And just to share one bit of calming wisdom my doctor shared with me, when I was on the verge of a meltdown and knew I couldn't go to Iowa ... We found an amazing guy in Philadelphia, PA to treat Grace but we too had to wait a while to get in. Shriner's has this application process that takes a while to process. I was freaking out that we had to wait -- her relapse was so terribly aggressive. But he sent me this really nice email and said not to worry, her foot won't know the difference between a couple of more weeks. When I read that I instantly calmed down -- a few more weeks won't hurt anything at all. And I believe the same is true for Matthew -- maybe he is relapsing, but even so it will just continue to do its thing and when he's treated, they'll take care of it. Period. Hope that helps a little bit! :)

sorry this is so long! I just feel that I have so much to share b/c I have been in the EXACT same situation recently. It's like I'm reading a story of our own experience. If you have any questions just let me know -- I'm here!