In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Wednesday, January 21, 2009
Extubed on Monday, and finally SENT HOME!!!!
Monday afternoon:
Doctors tried extubation at 1pm, and it was as simple as 1-2-3… Just as I had foreseen, Deedee did well, and soon was showing off being 98-99/135 on the bipap.
The night went on without any concerns. Deedee kept high numbers. Secretions were abundant at first but by Tuesday morning had lowered their intensity (although they had turned more sticky).
Tuesday afternoon: Deedee woke up in a good mood, and after a Wonder Pets marathon we finally decided that our Deeva could have a hair wash. One of the nurses got her the dry-wash kit, warmed it up, and off with the stinky hair! Yay! Deeva was not feeling too diva-like during the process, but upon realizing that it was mainly a nice warm massage, she complied to let us do our job. After the nice hairwash and the nice bath, she got dressed up and went to catch some z's.
Daddy arrived with the LTV, we switched the ventilators and watched the numbers. Everything looked good, Deedee never felt the change. The doctor asked us if we were comfortable going home, as they know we can do what is needed now to keep Deedee recovering. No sense in asking, it was an obvious yes!. So arrangements were made, and by nightfall the critical care ambulance arrived, with the usual crew, and took us home.
We arrived around six, then the quest for cleaning up began. We cleaned/disinfected Deedee’s room, and so the bird finally landed in her nest. She got her respiratory treatment at her usual 10pm, and then she went on to sleep for the whole night. Wow! We checked her up at 2am and 6am, and there was no need for doing anything, she was clear and in seventh heaven... And looking like nothing happened. She really needed the rest, when you are in the hospital you don’t get to really do that with so much poking and probing.
So, we are trying to be back into our “normal” schedule… Well, at least half of it... It will take a whole week to get back in synch with our so called normal life...
Deedee got her morning respiratory treatment, but bath was in hold for later as we had to cleanup the mess around the apartment, making sure everything is germ-free. After everything was in place, she finally got her bath, was placed in her wagon and was moved to the living room so she could watch Superman Returns. She’s been doing great the whole day, physically she looks relaxed and her numbers keep on between 99-100. We have not taken off the bipap today, as we need to start that little by little when she is completely recovered. We got a visit from Peter, one of the RTs from the respiratory company, who brought the humidifier for the bipap, so her throat heals well. Later on at nightfall we got a quick visit from NurseMarie, who brought some goodies for our tummies.
We are still doing plenty of laundry (after all it was 2 weeks, plus everything else that needs cleaning), and we are ordering paperwork and medical items. Still, we hope to get sound sleep after Deeva’s respiratory treatment. We are past due in matters of rest. Hopefully tomorrow will be more “normally inclined”... Well… The day will begin with a new nurse for training… Wish us luck.
Thanks to all the people that sent so many prayers in behalf of our Deeva. They were heard. We know many were really worried, and gave plenty of support and care. Thasnks to NurseGlenna and to LandlordSweatte, who more than once gave us a lift and helped out through the "hospital episode" and the snow.
Once more, God smiled upon us all and made things run smoothly. Who says Christmas is over? We feel we are in a chapter of the old Jacobo Morales series... We are grateful that things went right. So many SMA kids have been through a lot this winter! Our prayers include them, and their families. We know that the best way to help is to simply pray, for strength for kids and their caregivers, for wisdom and faith, and for never-ending compassion, as it is needed towards everyone that surrounds us.
We hope that somehow, someday, we will be able to give back all the love that we have received. We know that the Higher Purpose is there... at our grasp. Soon things will start moving. No one stays behind, and we don't forget promises and kindness. We just need a bot of "stability"to actually dive into the projects ahead... All fueled by our beloved Deeva, our inspiration.
10-4
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1 comment:
I've been checking in and am really really happy to hear the good news. Let me know when you've settled in and are ready to schedule the session.
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