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

Sunday, September 26, 2010

Some Time with precious Friends ...







Yesterday the boys and I had the privilege to spend more time with Sandy and Naoma Morgan and the boys loved every minute of it.

We picked up Sandy at 10 AM to take him to the Hospital to see his lovely wife and we all got to visit for about 1 hour. Naoma was not doing so well yesterday and had quiet a bit of pain. Now I understand the first 2 days are always the most critical and painful after a surgery as intensive as this one but I thought it was beneficial for healing to be kept on constant pain medication?
I am also not to happy this time around how much effort it took us to get the attention for a Nurse, actually it was only a couple of Nurse Assistance I saw. So I am thinking if it was hard for me to get a hold of one of them (Naoma had already pressed the call button several times) how bad is it when she is by herself? I am just thinking we were there only for one hour and I was a bit annoyed.
The other concern I have was the fact that the surgery was on a Friday. I was told by Sandy that the surgeon who did the Colonoscopy wanted to take the tumor out as fast as possible after finding it midweek.

When we were in the hospital with Connor we knew that all our prime doctors were out of the Hospital until Monday unless we were lucky and one of our doctors was on call. Weekends for us were always the time to take the boys to the play area and tour the hospital because nothing was ever scheduled for us.
Now when is the most critical time after surgery? The first two days after. This is in Naoma's case Saturday and Sunday....
The second thought that went through my head was that here is no Oncology Ward that specializes in Cancer Treatments here at this Regional Hospital.

By now you know me. I question everything and everyone who treats someone in my family, and you also know I learned that nothing but the best is acceptable for my family when it comes to Medical care. Now Naoma did see the Doctor who performed her surgery today but when I asked her what he told her she said he talked about the surgery but could not recall all he said. How I wish I could have been there!!!
I am just thinking out loud here and did not make a judgment at all ... yet :)

However, most importantly of all I did call Sandy tonight to ask him if it was okay for me to write my thoughts in the blog and he said he trusted my judgment. So I am hoping I did not let our dear friends down and I did held back on a few more opinions out of respect for their privacy and also considering they did choose this hospital and Naoma is in their care and I do not want to compromise any care she gets there. Plus, I might be all wrong and everything will go smooth this week and the follow up care will be excellent ... I always have hope :)

As you see it is hard to hold back my 'Mother Bear' or 'Lioness' behavior if anything involves people I love and care for. So if you are one of them then be warned I will do the same and look out for you if you should be touched by any medical or family emergency :)

The reason I am writing all this now is due to me being worried all evening yesterday when I called Naoma and her telling me she was feeling very bad and was bleeding a bit and that the Nurse said they will keep an 'eye' on it.

Well, I have calmed down a bit for two reasons. I called Naoma earlier this morning and she sounded much better! She said she had a good night sleep and the only issue she had was her not liking one of the Nurses or Nurse Assistants :) Well, I could smile about this and also sympathise on this since we had the most wonderful nurses but also came across a few we did not 'click' with on our journey :)

As to the reminder of yesterday we ended our afternoon with quite an adventure :) While we were visiting in the hospital we found out that the care taker had accidentally locked both doors into the Morgans home when she left. So when we got back to the house we tried to find out how to break into it. The boys loved every minute of it and were dreaming of breaking into one of the windows so they could climb in and open up the doors. Well, all the windows were locked and before we had to break any windows we tried to locate some neighbors that were home so they could be of help. We drove to two houses with no luck and so the boys and I convinced Sandy to come home with us and spend at least the afternoon and dinner at our home while we could do some phone calls to find help or wait for Ron to come home so he could help us. Connor was getting very excited because he kept telling me over and over how happy he was that we could keep Mr. Morgan. Alexanders was voting to call the Fire Department so they could come and open the house up. Both doors that access the house are key less and lock with Iron Latch. Well, I admit I gave the Fire Department a call but since out here in the mountains they are all Volunteer I only got a recording to tell me to leave a message or call 911. I was definitely not calling 911! Especially when I was told from Sandy that his Oxygen Bottles were accessibly stored not inside the house.
So we loaded up again with Sandy and his Wheel Chair and headed for home while both my boys had big smiles on their faces. I admit I loved the idea, too, because it would bring me to exact the point I wanted when we found out about the Surgery :)
As it happened on our way out Sandy and Alexander saw the next door neighbors pull into their garage so we entered their drive way and I asked them to see if they could help.
I wish I remembered their last name but I can tell you they were both so wonderful and the husband followed us to the house and not 5 minutes later had the window open next to the front door and through this was able to open the door for us. I know Sandy was happy to be in his home and this whole affair was very tiring I am sure. The boys were a bit disappointed that for one no big Fire Truck came for the Rescue and we did not get to 'keep' Mr. Morgan..... :)

The boys and I were so happy when Ron came home a few hours later :) We were treated to Taco Bell and a nice relaxing evening at home.

This morning it was wonderful being home with my 'whole' family and we got some work done. Ron moved some of the Fire Wood to the front door and made more kindling and I was able to sit down for some school time with the boys who had to make a eight page Book about each day on a Farm. I admit I still got resistance on writing the sentences but with a couple of breaks we are getting it done :)

The afternoon finished nicely as well as I got to visit with Sandy for a bit bringing dinner, followed by taking a drive with Ron and the boys to look at a home that is for sale and that one of Ron's Coworkers wants to look at.

Hope you Sunday went well!

Love,

R A C A

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