Where in the World is ...Eamon Joseph?!

Home. And doing well, really well. So much has happened since last Tuesday, the day we were discharged. Our transition home has been smooth. The details are still being ironed out, but in general, Eamon and his crew have landed softly into our "new normal".

Some highlights from the week for the prince's faithful fan club:

• I, the mother/nurse-in-training, changed the trach the day of discharge. Mostly it was my idea, wanting to experience it with backup. I was supported by 3 nurses, all encouraging me, but not stepping in to assist. It was all mine. Supplies were set in place, I was gloved, and at the point of dislodging the old trach utter panic almost consumed me. I announced the threatening sob, they tirelessly focused me, I took a deep breathe and went for it. The trach slipped out, and the new one slipped in quite easily. This will become a bi-weekly activity.
  
• 16 hours of nursing per day are in effect. This caused me great distress the week leading home, but actually has been wonderfully helpful. The nurses, all pediatric, are great with the prince, M&M, and us. I am heading up all care for Eamon, but am enjoying the camaraderie and support. I have the freedom to run out without packing up all the loot that accompanies the prince these days.
  
• M&M are home, making friends with the various nurses. Myles is thrilled, little brother is home and available for constant handling. Maeve has assumed the role of "nurse". She is cautiously welcoming this "new normal". She so adores the prince, but is a bit nervous with the bow tie. Tonight, was the first time she initiated cuddles with Eamon, somewhat forgetting about the trach, and just laying on the love.
  


• The prince has basically been on room air!!! During the day, Eamon wears a trach collar which provides a warm, humidified mist. If needed, oxygen can be attached. At night, Eamon is hooked up to the ventilator - the LTV 950, sounds like a fancy car - costs as much too! This smart machine offers pressure support on inhalation and exhalation. Most importantly, should the prince become apneic, the vent demands a minimum of 5 breaths per minute.
  


• The nursing, equipment and supplies are very expensive, and not fully covered by our insurance. But there is a season for everything. I have been pursuing various resources to assist us for months, even a year plus. One in particular, the CRPD-PDN waiver (Community Resources for People with Disabilities - Private Duty Nursing), which I started the paper work/interviews/home assessment in September was just approved - March 19th to be exact, right on time for the onslaught of additional costs. God is good. This program requires nursing, to which I was against, but still pursued with the hope of durable medical equipment support. I thought several times, what a wasted effort because I do not want PDN (nursing). But God knew, and provided a means. Oddly, I now can't imagine life w/out nursing. There is a season for every purpose under heaven.

There is more, but I will save it for another day. For now, I leave you with a teaser of the photo shoot I am planning - so stay tuned, Ears for Eamon coming soon!

Ready for some fun!

"With a wink and a smile..."

Happy boy on trach collar

He was out!

But still, so full of joy!