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

Wednesday, November 15, 2006

I just can't believe this

OK, when last I wrote, we were finally about to get nursing care initiated for Joshua in our home. As you know, I have been doing all of his nursing care, respiratory care, mothering, much of his teaching, etc. all by myself - not to mention I also take care of the house, meals, laundry, dishes, etc. etc. PLUS take care of an elderly, disabled couple part-time in their home (with Josh tagging along).

SO I was very relieved when at last - last night - we had a nurse in our home for the first night EVER. She arrived at 11PM, and we spent much of the next 2 hours going over Joshua's history and getting Joshua in bed, hooked to his bed vent and showing her where everything was located. I finally get to bed about 1:15AM, toss and turn a bit worrying whether I forgot something that could be necessary. Then I woke this morning at 6:30AM so I could talk to the nurse and see how everything went overnight before she had to leave at 7AM.

Everything seemed to be moving along fine and we were expecting her back tonight. Then we get a call from the nursing company case manager this afternoon saying the nurse would NOT BE COMING! What's more - the insurance company did not want to pay for nursing for us AT ALL because they couldn't understand why we would all of a sudden need nursing care since Josh has been on a ventilator since coming out of the hospital LAST YEAR.

It's not that he didn't NEED nursing care all of that time. I was just willing and barely able to provide enough care to get us by for a while - hoping Joshua would end up with the diaphragmatic pacer so he could be free from the ventilator and trach sometime soon. Of course, now, we have found out that Josh will be on the ventilator 24 hours a day for the foreseeable future. And, we should not expect him to be able to get rid of the trach EVER.

I realize I cannot go on indefinitely trying to be the one to take care of EVERYTHING all by MYSELF. I have been lucky so far that I have not gotten very sick. And, I have not even had an opportunity to go to a doctor or dentist for my own care since all of this happened - which I need to do.

Oh God, I just pray that this nursing issue can finally just be worked out. I do fear for my son's life. We know from tests performed at Rush Hospital in Chicago that should the ventilator fail and I sleep through any alarms, etc., Joshua could die right there in his bed during the night - because he WILL STOP BREATHING.

I've got to go to bed now and get some sleep. Just please everyone pray for us - this is very difficult on me. Thank you and God bless!


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