Saturday, August 3, 2013

Surgery, tests, and the gift of suffering

(((Uhhh, apparently I wrote this while in the hospital and never published it.  Sorry :/  Better late than never I guess!)))

Dominic worn out while getting an EEG to check for seizure activity
Dominic is coming along quite well.  We are now in week 3 of this admission and he is doing pretty well so far.  He is still off the vent but is now needing supplemental oxygen.  Not much, just a whiff... just enough that we'll have to lug that big ol' oxygen tank around with us.  But, no complaints here, at least he is still breathing on his own!  He has also had apnea when asleep so at some point this week we will be having a sleep study to determine exactly how often and from what location in the brain the apnea is originating.  The results of this study will help us determine if we will continue off the vent at night or if he needs nighttime ventilation again.  God's will be done.

A perk of the hospital life: sitting in your baby lazy-boy watching a baby movie :)
Tomorrow Dominic will have his surgery, MRI, ABR (sedated hearing test), and nerve conduction velocity test (to check the progress of his hereditary spastic paraplegia).  So, start sending those prayers this way!  I'm going to be sure when they need to start his IV tonight that we avoid the issues we had last week and forgo the IV team- I want a plain ol' floor nurse- they seem to be a better stick.

As you may have picked up from my *subtle* distress on my last blog, living in the hospital away from our other kids and Mike is trying.  Thankfully I'm married to the best man I know and he took over for 4 days so I could rest and gain some perspective.  It was awesome to be with the big kids, my sister and her family, and my parents in Oklahoma for a family reunion.  We got to see extended family and the kids literally wore themselves out swimming and playing with their cousins.  It was a nice break- much needed.  A break from the hospital is always therapeutic, helping you to once again be charitable and patient with the tiny annoyances of living there.  It is not big mistakes or blatant transgressions that get to you at the hospital, it's the everyday annoyances, the tiny pin-pricks that build up over time.  Suddenly you look up and something the size of an ant suddenly looks like something the size of an elephant.  Then you become one of "those moms,"  and nobody wants to be one of those. 

Something that has helped this admission (uh, except for that one day when I wrote that blog... sigh) is reading this book titled  "He Leadeth Me" by Fr. Walter Ciszek.  He is a priest who was arrested in Russia and held for 15 years, without anyone knowing what happened to him, all the while suffering in prison and labor camps while finding God's will in the whole matter.  I read something yesterday that struck my core.  Amid the horrors of hard labor in a prison in Siberia he realized that what he was presented with that day was God's will and it was his job as a priest and Christian to consecrate that day, that situation and give it back to God.  He says he learned you are not to endure your daily trials, your monotonous work, your unfair and difficult situations, but rather you are to embrace them with full knowledge that what your are enduring is God's Most Holy Will, a gift He has given you to bring you back to Himself.  I can see that truth in the daily grind of hospital life, the daily rituals of care for Dominic, lack of restful sleep, or life with a child such as he.  This is not a life to be endured, simply to 'get through,' rather this is a blessed life where in His goodness our Lord has given me these trials as gifts.  Gifts, if I accept them, to be given back to Him and along with it a little piece of myself until all that remains in me is Him.

In and for Them,
Thanks to one of my PT friends who spoiled me with a box of Cheeze It's yesterday, Dominic had his first taste- he was a fan.

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