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

Wednesday, February 17, 2010

Day 21 at CMH and TCH (The Children's Hospital) in Aurora, CO

I am so so tired but want to type something because this has been a very eventful day for all of us and I worry I will forget half of it by tomorrow (I do feel that exhausted)

I hardly slept last night because I was so looking forward to our trip home and Connor's transport team of 3 showed up at 7:45 AM. We departed CMH at 8:15 AM and Connor was all smiles because he got to see Stan one more time and say his goodbyes. One of his nurses even cried ... it was all very touching!

He was then loaded into the Ambulance and we headed for Midway Airport Hangar 715. The coolest part for Connor was the fact he was asked while laying on the gurney if he wanted to watch a movie while driving to the Airport and then when traffic was backed up the drivers put on the sirens so we would not be late for our departure. You should have seen him smile then :)

Now most of you know that I was a Flight Attendant ones for AA and I have flown in many different planes in my life BUT I have never been on a plane this small! It actually had propellers and it was tiny but it held the stretcher with Connor and seven more Adults. We all took pictures even in flight which was funny since there really was NO room to move but unfortunately the battery for our camera is now dead so I can not download any of them for a while since Ron has the charger...

Our flying time was a l o n g 3 1/2 hours but it helped that the crew had bought lot's of goodies from Panera Bred for us to eat :) We landed at the Centennial Airport in Denver at 12:15. We then had a 30 min drive to the Hospital and have been settling in at room 822 since then.

The Hospital (TCH) is very beautiful as it is only 3 years old. All the rooms are private and huge and reminds us of the Children's Hospital in Dallas. We are in a strange way both homesick for all the employees from CMH. Now we feel like strangers trying to fit in again....

Ron & Alexander had a decent flight back on AA and the big event for Alexander was that in the row in front of him was a Police Officer with a K9 German Shepherd that looked just like Tasha :) I did feel bad for Ron who had of course the biggest job moving us back home.

The only little hick up is the fact that no kids under 12 are allowed to visit. Connor is able to go downstairs and socialize with Alexander but not in the room. As it stands Ron will stay home with Alexander for 2 days and get the dogs tomorrow. I will then go home for 3 days while Ron stays with Connor, and after that Ron and Alexander will head for Anchorage.
We have no idea what the near future will hold. Connor and I met Dr. Soep today and she seems very very nice. Connor was all smiles by the time we met her and her team and of course asked right away when we can go home. She told him she will know more tomorrow after the Physical Therapy came by to make an assessment. She believes that Connor might need extensive therapy to begin with and that could include 3 hours a day!

Ron and Alexander just called to tell me they got home and that they love it! I have to admit I am a bit jealous - ha ha. Especially since we got spoiled so so so much from friends that have been preparing our home for our arrival. Trust me in two days I will be home and passing out in our bed!!!

As an update, Harlow Olivia is doing much better and her numbers dropped from the 20's to the lower teens so she was released but had to go back in tomorrow to check her levels again. She got poked about 10 times which is not fair considering she is only 6 days old... poor thing. Niki sounded good but is probably as tired as I am at this point.

We also have sad news from our friends Kim & Grant who have been such a support for us in Chicago. Grant was readmitted again today to CMH due to his liver levels being high. Please think of them as it must be so disheartening to return to the hospital after just being released :(

Okay, I know I could write more about today but I am barley moving my hands.

Love,
R A C A

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