Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Tuesday, October 11, 2011

A Trip, A Funeral and a Scare!

One again I can only look back and wonder how much can one fit unto one week and call it normal?
I look at the last 7 days and all I feel is exhaustion and if I hear someone udder the words 'They are Bored' I might feel inclined to slap them on the head. How I crave and dream about these words and wonder what creatures exist that know what boredom is all about?

Last week started with RW's Death. We had counted on his doctors words of another 3 to 4 weeks with him but he passed after just one week into the countdown...

While we were trying to figure out how we would manage a trip to ID I also had the hiccup of trying to flush Connor's Port and was extremely Thankful to my precious friend Allison who volunteered to do this (after I begged her of course :) Connor was so happy with the experience and it was a huge relief for me to not battle him on one more JDM related issue. As it was I still had to inject the Methrotrexate that night as well so it was a strenuous day for Connor and Allison's help made it a lot more bare able!
Ron at the same time went to see Dr. Young as he was not feeling to well and had spit up some blood earlier in the morning. They ran some intensive Blood work and we were expecting those results later in the week.

So then we faced the organization of our trip to ID. We wanted to drive and figured that the Funeral/Memorial would happen the following week so the plan was at first for Ron to take off on Thursday or Friday with the car and the boys and I would follow by plane on Monday after we dropped of my Parents for their flight home to Germany and then meet Ron in Seattle. My Parents trip was scheduled for Monday the 10th and the biggest obstacle I faced was the fact that I would need to find a Pet and House Sitter on very short notice. Our precious Ms Lee who always takes care of our home when we are gone went in for Foot Surgery on Friday and is in recovery for the next 3 months.
All those plans however went out the window when we learned the Memorial was to be on Saturday already. We were facing this on Wednesday and we figured in no way or form could we drive and make it back for my Parents Departure on Monday. It is a two day trip each way ... We knew we had to fly now to make it and the only Solution we could figure out was buying tickets for just Ron and I and planning this for a quick trip to ID with a return on Sunday. My wonderful and sweet parents offered to watch the house and the boys so off we were. Trust me this was not what I figured our first trip EVER away from the boys  would look like. Also it was not an easy choice as my parents are 77 years old and I know my dumplings can be a hand full. Of course I also know my parents raised 5 amazing kids ;) and have 13 Grand kids so not much can shake them ... Thank Goodness!!!

As you know I am always very curious when we get to fly with other Airlines and this time I was back on United Airlines and Frontier. I have to try to make a separate posting on this experience but just as with Southwest this Girl was NOT ... NOT ... NOT impressed. How I can get homesick for AA every time I cheat on them is almost funny. All I say for now is quality was a part of this and cheaper fares truly equals cheaper equipments and service... more on that later...

So Ron and I arrive very late on Thursday night in Spokane WA and even it was late we were met by Tammy, Andrew and Christina with a beautiful Birthday Greeting for my lovely husband. His Birthday really did not get the attention we had planned and the boys were in tears when we left, he never less had a Birthday Cake (Fresh Strawberry Cake with Whip Cream thanks to my Mom) and a French Dinner at the Airport Cafe. So seeing Family on arrival was a wonderful surprise.
The next morning, Friday, we checked into our Hotel in Post Falls ID and then met Sam, Tammy, Andrew and Christina for Breakfast at a close by Denny's. It was a nice but of course subdued breakfast until Ron got a call and said we had to start moving. He did not say what it was only that we had to go to another place. So we went and drove Sam home and then the rest of us drove into Coeur d'Alene. I kept asking Ron what was wrong and where we were going but he just said for me to drive and he would tell me in a bit. He also added for me to not get upset ... WELL ... if you know and love me then you know if you do not give me details I will make up my own stories and I was already having some ideas on what was going to happen and none of my thoughts were very flatering towards one potential Family Member who I thought was involved. I got thrown for a loop when we pulled in to the Kootenai Medical Center but even had an explanation for that until we got out of the car and Ron hugged me and said the reason we are here is  that the call he got was from Dr. Young's Office and that he needed to get to the ER as fast as possible as the blood test results came back and his D Dimer Level was high at 0.07 (normal is 0.0 to 0.04 and that this could indicate him having a Blood Clot in his Lungs and that he is walking right now with a ticking time bomb inside of him. Do I have to say this was a very scary time? The Medical Team at the Center was very good and Ron was admitted right away and he was hooked up on an IV within about 10 minutes. He had a CT Angiogram on his Chest done and the result did not show anything in his lungs. This was truly more anxiety then we needed and I am grateful for having Tammy with us as she is very well informed in the Medical Field. Of course I wished so much we were home and not in another State. To think how there could be a clot in his lung and he could have died just like that was more then shocking, add the reason of our trip to go to our Brother In-Laws Funeral and my worry about having left my Parents at home with our boys was truly more then I wanted to deal with. As always, life does not care what you want and as always before, you manage and move forward.
The preparations for the Memorial moved forward without a incident and we did not tell Sam what had happened as we figured she had enough on her plate by loosing her husband. The only thing was we arrived late at the meeting with the Pastor to talk about the next days Service.

Oh, now I am at a point were I inform you all that please refrain from getting a Pastor should I pass away! The boys already decided that when I leave this Earth that I will be cremated and turned into two Diamonds, one for each, and as for a Memorial I want all my Family and Friends to write two sentences about me, one why they loved me and one sentence about how I drove them crazy! then I want a buffet set up with lots of Chocolate, Coke, Wine and Beer ;) and for lunch you all need to head to a McDonald's where ever you are and have a Big Mac and some HOT extra Salty French Fries with another Coke in my honor ... oh and to finish off you may have a Snickers Bar ... my favorite comfort food in my early years ;) then go and have fun and laugh because I know I will be laughing knowing most of you will curse me for making you eat junk food - haha

Fast forward. We arrived at home late in the afternoon on Sunday. We had an early dinner with my Mom, Dad and the boys and then went to bed. The Alarm got us all up at 4:15 am and by 5 am my Parents and I were on our way to the Airport to take them to DFW. They made it on the Frankfurt Flight at 2:35 pm CT and I was back on a plane to C-Springs by 3 pm.
I so thought I would have a good night from how exhausted I was but still did not sleep well. Today the boys had school and Ron had his Check-Up with Dr. Young.
The news are he has elevated PSA Levels and now needs to go to a Urologist for a possible biopsy. He also was diagnosed with Heliobacter and will start a 2 week treatment tomorrow. I promise when we find out more I will post but for now this is all there is in a nut shell!



Hugs,

R A C A



No comments:

Post a Comment