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, March 23, 2010

Prayers needed for Henry & Co.

If you have been following our blog you know by now about all the families we fell in love with while we stayed in Chicago and in Denver.

Today I got an e-mail from Henry's Mom, Kathleen.
I will post some of what happened to Henry this last week and when I read it I can promise you my heart must have missed several beats and knowing Henry and how wonderful he is and to read what he went through was almost a physical pain. Just as with Hope, it is hard to put into words how those children take a piece of your heart, and on top of all the pain they go through, they are still the most beautiful spirits out there. Kindness and Hope is what they teach us Adults!

Here is part of the message:

...Writing to let you know that Henry had a setback last week. After his last (intense) chem treatment, he developed a very horrific infection. It attacked his lungs, heart and pretty much every other vital organ. He was placed in the ICU and worsened by the minute. He was placed on a ventilator to breathe.
We were told on Saturday that he might not pull through. He was immediately placed on the critical list and the crisis nursing team was assigned his care.
He has chosen to fight. The wonderful docs at CMH saved his life and made it easier for him to get back to us. Finally, this morning, they assured me that he was out of the woods and over the mountain!!! They are right now in the process of downing his meds and bringing him back to consciousness.
We as a family are not only luck, but much stronger!
I can't wait to talk to him -- it's been 5 days.

Bob just told me that the doctors will be taking Henry off off the ventilator tomorrow morning. We will have his sister on hand to welcome him back to our love!!!
We are in a very fortunate spot.
The only place scarier in the hospital than 4 west is the ICU. Pray for those families. Our prayers have already been answered......

So please once again I am asking all of you to pray for Henry this time, and for all those children in the ICU fighting for their life's.

Why is it that I always have to be put in my place in regards to what really matters. Here we are at home and I am complaining about the In Home Care Nurse we had today while people we love are suffering so much pain right now.

One thing this journey thought me ... I will never be the same person I was before December 2009 but thanks to all those Children, Hope, Henry, Grant and Emma I am the better person now because they thought me real strength, real Hope, how to be funny when in pain and most off all they showed me what real beauty is all about!

Hugs,
R A C A

2 comments:

  1. I'm glad to hear Henry is going to be o.k. We also went through the same thing, my son's life was in jeopardy but, the nurses and doctors at CMH were wonderful, they are very good at what they do. As for the home health nurses, you have a right to complain, you have to worry about what is right for Connor. We had some bad nurses and some great nurses. I was always very careful and watched everything they did to my son, because they have to be careful about using sterile procedure when accessing his port. We also had trouble because my son had a hard time with his home being invaded by the nurse coming to poke him, I didn't think this was very fair to him. So, we started doing his infusions at our local hospital. That wasn't the best solution either because he could pickup germs. I hope this goes well for Connor, and just hang in there, all you can do is live day by day at this point.

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  2. Amen to that! We were back in to see the surgeon at CMH last week for a follow up with ortho, and looking around the waiting room...you just realize that she is on the road to complete health and strength, while there are so many others that do not have that potential. We are so blessed, in so many ways...and your post nails it on the head! Have a great day!

    Beth

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