The Beginning- Part 2

So, the beginning (that first year) was pretty hairy. Javad was in and out of the hospital at least once a month. I couldn't go back to work, because we never knew when he would get sick again. He was so tiny and we were so clueless about how fragile he was. Now looking back, it's frightening how fragile he was and how easily we could have lost him. Ignorance is bliss, as the saying goes.

It became the joke that we knew all the residents and interns. We knew who was following who on the pediatric floor. Our doctor once told me that someone shouldn't really know that there is a rotation, so for us to know everyone was a bit frightening! That first year we were grateful that he never went to the PICU (Pediatric Intensive Care Unit). How would I know that later, the PICU would become our home for many months. We just went along say by day with two routines at home, "Javad in the hospital" routine and the "home" routine. I would sleep at the hospital and rarely go home. The kids would come visit in the hospital. We had a weird sort of reality going!

When Javad was about 3 months they diagnosed him with Congenital Myathenia Gravis. I pored over the web and any materials I could find and learned all I could about MG. Everyone seemed happy that he had a diagnosis and we marched along, feeling satisfied that he would get stronger, it was not a progressive disease and there were treatments available. He continued to have his ups and downs. We would spend time in the hospital and then at home. I always had a bag packed or could pack in an instant. We had the doctors on speed dial and could direct admit him. We were getting much better at predicting when he was going downhill and could be far more proactive. All were feeling satisfied about our progress at caring for Javad.

This went on until he was about 18 months. At a visit to Shriner's Hospital, our neurologist, Dr. Russman, told me that he wasn't convinved that Javad had CMG. Javad was on some medication, Mestinon, that is used to treat CMG, and he felt that we should be getting a better impact after the medication was given. He suggested that we have a muscle biopsy to confirm (or deny) that he indeed had CMG. Javad was getting tubes in his ears in October, so we arranged to have the two surgeries piggybacked and have the biopsy done as well. The results caught me a little off guard. In late October I got a phone callthat the biopsy results were in, Javad had been diagnosed with Centronuclear Myopathy, a very rare muscle disease affecting approximately 300 children. At that time I thought that there were more, but have since learned that there are very few. I rushed to the computer and looked CM up on the weband found it also called Myotubular Myopathy. What I found shocked me. Many of these children (mostly boys) rarely live to see their 2nd birthday. I was HORRIFIED! I called my father in tears (who handled it pretty well considering) and he came over immediately.

SInce I know my dad doesn't cope well with hysterical women, I pulled myself together by the time he got there and we talked. Okay, it says that many don't survive until their second birthday (his birthday was in one week) and Javad was doing pretty well, considering. I had been home alone (David and the kids were in Idaho at BibleQuizzing meet) since Javad had been fighting off a bug. Not really the ideal way to get this kind of information. Once my dad left, I searched the web for everything I could fine (thank God for the web!) and found an incredible support group (who I consult regularly to this day!)

So, fast forward...the next two years are a blur of continued hospitalizations, near fatal respiratory events, getting to know the doctors and nurses of the PICU on a personal level, and Javad making slow, but steady progress. So that brings us to the spring of 2005. Javad had a near fatal respiratory event and the hospital finally threw down the gauntlet, trach him or we could not be treated there any more. Whew! That was the big one! After a lot of tears, long talks with Dr. Nichols, calling and writing my friends in the Myotubular Support Group, I felt at peace. Javad had been struggling (and partially not breathing) for almost 15 minutes. There could have been brain damage or ultimately death! We were not against the trach as a principle, but rather that it was a first option. We had finally reached the end of the road. SO we had the trach placed last June, Javad was released in July, and, after one brief hospitalization in August, has been home ever since. Now really, we have a hospital in our house (nursing, ventilator, suction...two actually, and a variety of other things.) Let's face it, barring a major emergency, we are set.

So, now, here we begin, soon to celebrate almost one full year hospital free. Unbelieveable! So this is the beginning of our journey together. Check in regular and often!

Love thoroughly...live fully...forgive completely...peace always