Tuesday, April 26, 2011

A Holiday: DeStephano style.

Reason is our soul's left hand, Faith her right.  ~John Donne


Our Easter was like many. Early to rise, donning our Sunday best for the occassion, attending Sunday school and Church service, singing praises and being genuinely thankful for this day. The rest of the afternoon spent visiting family and basking in the beautiful spring weather. 


It was a bright, warm day. The sun shining sharply throughout and accompanied by a cooling rain shower in the early evening hours. The rain creating a blanket of moisture in the atmosphere. 



We were greeted by family's "pets" and enjoyed each others company during our visits. 



As we visited with the doctor on Thursday, we talked about Wyatt's increasingly labored and distressful breathing. It was said that we could put him on his Bi-PAP machine during the times that his body needs the additional support (he typically wears it at night/sleeping) and/or we could try good ol' plain oxygen (O2) via nasal cannula. It appears to us his body and muscles just get too tired, which make his heart rate go up and breathing labored. So we were prepared to start the trial and error process. Wyatt has never liked the cannula on his face and has always detested having to use it when it was needed. So I expected a displeased boy assuring us it wasn't needed and was not helping in an effort to convince us to take it off. This weekend as his breathing became more labored throughout the morning and early afternoon we asked him how he felt. He gave us the signal and we pulled out the O2. He put it on willingly and we adjusted it to a suitable amount. It actually appeared to work, taking the pressure off his body and allowing his heart rate to slow down and him to take slow adequate breaths. It also looked to help with his hyperthermia while in the hot muggy air, as well. I'm not sure if it was a coincidence or if, perhaps, taking away the struggle to breath helped relieve his body enough to work more efficiently at regulating his temperature. We're not sure, just yet, but I imagine we'll figure it out as time goes on.

 

After a short while on the O2 he perked up, smiling, joking with us and laughing, looking more comfortable than he had all morning. Throughout Sunday afternoon/evening he would remove the cannula, play for a short while and then come back to put it on. While receiving the additional O2 he was perky and happy...when removed you could see him start to become moody, emotional and fizzle out. It was eye opening.



We arrived to our home again late Sunday evening, the kids all sleeping on the way and going straight to their beds in their dreamy eyed state. 


There was no school Monday morning, so the trio slept late and enjoyed lounging throughout the day. Recovering from the filling holiday. Though, Monday early evening we did have a baseball game to attend. We arrived armed with the oxygen tank and cooling towels ready for a test of our trial and error experiment. Surprisingly, Wyatt started requesting the O2 when he felt he needed it. That alone speaks volumes. Today, as the week progressed into our usual routine the trend continued...with the additional respiratory support generating a perky, animated, pleasant kid. 

It always amazes me to see the happy, perky kid that we know is in there emerge when we find that intricate balance that his body desires. As he requires more support, it's typically a somewhat gradual progression reaching the point that I know something is up and my instincts are kicking in, but I sometimes can't quite pinpoint what the exact problem is until we start brainstorming and/or trying things. This was one of those times. My "Mommy radar" is silenced for the time being and all is well, for now.



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1 comment:

  1. Love your Easter pictures!!!

    We "discovered" this use for O2 in Eithene as well. We have had in our house since she was an infant, due to a birth defect that meant she'd need O2 for all of her frequent respiratory issues and sometimes while sleeping. We'd never just put it on her when her sats were "ok" and watched, until we realized that while on O2 (even while sick), her heart rates and breathing rates and autonomic issues were always better! For awhile, even her GI tract improved slightly (before total intestinal failure eventually occurred). It was eye-opening for us too, and we convinced her pulmo to let her stay on it permanently! She usually uses 2-3 L by day, and BiPAP at night. Hope it really helps Wyatt!

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