Monday, September 04, 2006


So... where are we?? Grace continued to be in and out of consciousness the balance of Saturday and Sunday morning. Sunday mid day when we sponge bathed her it was so obvious that her body is dying. Her skin is so dry even though we cream her multiple times a day (lack of hydration), her neck is stiff and overextended so we are unable to lye her on her back (even to change a diaper), her mouth secretes yellow "goo" since her saliva glands are no longer operating properly. We do "mouth care" multiple time a day (wiping her lips, teeth and inside her cheeks with a warm cloth, Vaseline on lips) as advised by our doc, but yesterday was the first time we witnessed this buildup. My mom has lived this before since she cared for her own mother when she was dying of cancer. My mom has been an inspiration through out this process. Like yesterday with the mouth secretions, when I saw them I was stunned, panicked and shocked at the deterioration to the point of not being able to continue wiping. My mom calmly explained to me what she thought it was (which was later confirmed by the doctor) and took the cloth from me, rinsed it and continued to wipe. I sat there watching trying to digest once again that my baby was dying while admiring my mothers strength to continue. I know she loves Grace as though she birthed her herself (actually on a couple of occasions I've had to remind her that that is not the case) so it's not at all that she is more distanced from her and as a result better able to manage. I think having lived this before she is aware that at this stage one of the best ways we can show our love is through immaculate care for our loved one, pushing our squeamish feelings aside. I hope that one day I am able to guild some one else with the same level of strength that my mother currently guides me.

In the afternoon Grace's breathing became a little unstable (long periods of apnea) so we hooked her up to her oxygen for the first time. She didn't like the nasal prongs and a couple of times mustered up the strength to pull it off. After pulling it off she would then stick one finger up her nose and leave it there making it impossible to get the prongs back on. She's one smart cookie. Finally, she fell into a good sleep, we were able to dislodge the finger and replace the oxygen prongs.

Last night Grace stopped breathing somewhere between 10pm and 11pm. My parents had left for the night, Ians mom was watching T.V. downstairs and Ian and I were in our room with Grace lying between us trying to determine whether her sleep apnea (pauses between each breath, was up to 25 seconds) was getting worse and whether we should adjust her oxygen flow or call the doctor. When suddenly Grace's eyes bulged open, she begin wheezing and then stopped... she was lifeless. Ian yelled to his mother to call my parents, Ian called the doc while running to get her morphine. I cradled Grace hysterically begging for her to breath. Minutes later she begin sporadically taking breaths, the doctor arrived and administered morphine while examining her. She continued to do poorly so the doctor stayed for a few hours to monitor her and administered a medication to help clear the secretions in her mouth. Grace briefly struggled to breath for a second time while the doctor was here so she administered more morphine. I never knew that morphine is not only a pain med but is also used for sporadic breathing. Around 1am Grace stabilized, the doctor left but all family stayed. I ended up falling asleep for an hour with her in my arms (I had taken too many meds to try to stay calm) and Ian was up the entire night. The doc returned early this morning and ordered in suction equipment to complement the oxygen equipment we now are reliant on. The nurse just left from showing Ian how to use it.... I no longer participate in these training sessions. I have accepted that at this point in the game, I am far to emotionally unstable to be reliable during a medical crisis involving Grace. I am in such fear of Grace not dying in my arms. It seems as though when ever we hit one of these crisis moments the only thing I can do is cradle her, rock her and reiterate my love for her. As a result Ian was trained. So far today she has been unresponsive (in coma) but seems to be breathing much better. Ian is now resting (having been up for over 24hrs). We are busy rotating her position every 4 hours, administering mouth care, keeping her eyes moisturize with saline, applying lots of cream as well as playing her music and reading stories. I would love to hear her little voice again... Especially her classic "No Mama!" The doc will be back tonight. Thank you for your prayers.


Blogger Lindsey said...

My thoughts and prayers are still with you.

8:48 p.m.  
Blogger paula said...

As i read the update on grace's condition i can't belive how stong you guys are,GOD is with you and HE will allways are amazing people and as i read your story i can't stop crying thinking that a few months ago i believed i was going to die, because on my 5th month of pragnancy i found out that my little girl was dead.but what you guys are living is so much bigger!1 and so many times we are so selfish thinking that nobody ever passed to something worse that us and here you are ,amazing people !!!the sun will shine your way again ,have faith, faith is half way thoughts and prayers are with you. Paula

10:48 p.m.  

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