Find out how a rare breathing disorder has changed the life of my young son and my family.

Thursday, July 06, 2006

We got some news this morning that we've been waiting for .. for many months.

Rush Hospital in Chicago finally called with dates for when they will see Joshua to evaluate his condition - in hopes that he will be a good candidate (in their eyes) for a diaphragmatic pacemaker. Josh wants this very much so he can get rid of his trache.

We are scheduled to admit Josh to Rush Hospital on Sunday September 24th by 5pm and he will remain there through Thursday September 28th till 3 or so in the afternoon. There will not be room in the room for me to stay and sleep there - but they have efficiency apartments connected to the hospital that I can rent. That way I can stay with Josh till after he falls asleep, then head off to my room and get some quiet rest. There are even little kitchenettes in there so I can bring food there and fix it - to save some money. I asked about the Ronald McDonald House. There is one in Chicago - but not close by - and a taxi ride there and back each day would cost approximately 70 dollars! So it sounds like the efficiency apartments are my best bet.

Between now and September, we will be very busy. The doctor at Rush wants every piece of medical & learning difficulty records on Josh from every source out there - which I have to contact to get those records. They also want Josh to be seen by an Endocrinologist and his ENT doctor again before we go there. The Endocrinologist because Josh dehydrates so easily. The ENT (ear, nose & throat) doc to check and make sure Josh doesn't need a different size trache - they don't want too much air lost when he is on the ventilator.

I need to arrange for a plane trip for Josh and me roundtrip - but to make sure the tickets are NOT non-refundable - just in case they have to change the dates. And I need to book the efficiency apartment at the hospital. And of course - I need to raise a lot of money soon so we can pay for all this - yikes!

With all that said, please keep us in your prayers and let's all watch for God's hand in this!

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