Hard night that stabilized

Hi Everyone,

I was going to title this note "Hard night that got better" but then it occurred to me that the word "better" was so far from appropriate. Right now I guess "better" for us is stable, meaning no active crisis taking place in this moment. Grace was in a coma (I have to still get used to this word... I'm finding that I'm saying "sleeping" instead, and she is far from sleeping) for the balance of the afternoon and early evening yesterday. Ian and I were feeling comfortable telling my parents to leave and get some rest, June (Ian's mom) was here for the night and we just wanted to lye and talk to Grace. It's so odd, now when I write her name, I almost feel it appropriate to put it in quotations like "Grace". Is that terrible?? I don't know... maybe this is too honest but she is so far from the Grace we have enjoyed over the last 2 1/2 years yet still so cherished ... it's truly so hard to comprehend so even more difficult to explain. Ian and I began the routine we do every 3-4 hours: rolling her limp body from one side to the other to avoid bed sores, wiping the inside and outside of her mouth and putting Vaseline on her lips, saline soaking her eyes to remove the residue that makes her lids stick together, applying drops to her eyes, moisturizing her nostrils with saline soaked Q tips (the oxygen makes them dry), wiping her face and neck as well as creaming what feels dry. Did you notice I did not include a diaper change? Grace is no longer urinating or having bowel movements. When we rolled her from her left to right side her breathing became distressed and she began wheezing for air. Ian and I placed her back to her left side but the fluid in her lungs had been disturbed and this return to her previous position was not fixing it. Ian began suctioning her without success. We turned her oxygen on high and called for Junes assistance (she's a retired nurse). I began to panic, maybe our decision to keep Grace home was a mistake, maybe we should be in hospital. I know that to make this decision we had done our research. We spoke to other parents who's children had died and they had recommended being at home for as long as we could handle... to the end if possible. We had visited a hoists to see if this would be more comfortable for Grace. We had discussed in detail with the palliative care team whether Grace's care would be at all compromised by not being in a medical facility and we were insured that it would not be compromised and that her quality of time would definitely be enhanced by being at home. But in this moment of her gasping for air, I questioned what I had strongly felt was a sound decision. After placing a panicked call to my parents asking them to return, June, Ian and I began frantically suctioning, repositioning and administering morphine hourly until Grace began breathing comfortably again at 12:45am. Over two hours of distress. Truly uncomprehendable. Ian and June stayed up for the night, rolling Grace, administering morphine every 4 hours and monitoring her breathing. My parents stayed and I tried to find rest lying beside my baby instinctively jumping up every few hours to check on her condition. I don't know if many of you have read the book "Tuesday with Morrie" but if you have not I would highly recommend it. It tells the story of the last year or so of a man's life who is dying from a degenerative disease as documented through interviews that took place every Tuesday. There are a few lines in this book that will stick with you forever. One being "you must learn how to dye before you can truly live". I think this is why cancer survivors usually say cancer was one of the best things that ever happened to them. It teaches them how to live, truly putting in perspective what is important. I know we all say it, like I remember saying it when I had Grace... "now I know what is truly important", but now through Graces suffering I truly live it. Maybe this is just me, maybe others are able to reach this epiphany without enduring such tragedy, all I'm saying is that Grace has saved me. Saved me from self absorption, over indulgence, truly has made me acknowledge the difference between "needs" and "wants". Our needs are truly such a miniscule amount of what we posses. I'm not saying I'm moving to a third world country to live in a hut. I'm just saying that I remember being convinced that Ian and I "needed" a 4 bedroom home to expand our family from 3 to 4. I remember thinking if we could afford it 5 bedrooms this would be even more ideal, one for each of our planned 2 children, our room, an office and a spare room. Now thinking about this is mind boggling to me. I just didn't have a clue. I thank my sweet baby for saving me, teaching me how to truly live, laugh and love. She remains in a comfortable coma. May she continue to find peace.

Les

P.S. I keep hearing that so many people now follow this blog. Initially Alex created it for me so I would not have to individually contact the dozen or so close family and friends on Grace's condition. Truly just as a time saver. I am complimented that so many of you faithfully read this blog out of sincere concern for Grace and our family. Your prayers have given us strength throughout this horrific process. However, sometimes I question whether the honesty I write with is beyond that which I should share with the many who now follow. Hopefully not. Should it bother me that so many know that I can't sleep without being medicated? Maybe. Or would it be more concerning if I could sleep without being medicated while living this nightmare? Probably. I'm just gonna keep writing. L~