Saturday, May 29, 2010
Vi's First Outdoor Shower!
Just wanted to post this beautiful photo from Vi's first outdoor shower since she has been home! How beautiful and refreshing does it look?!?
Monday, May 24, 2010
HOME SWEET HOME
It's been a little more than two months that I have been home adjusting to my new way of life with a vent to breathe for me, a G-tube that takes in all my nourishment (all of one flavor every day) and eight caregivers that divide the hours of the month so that I can have someone with me 24/7.
Can you imagine having someone with you 24/7 and doing everything for you because you are not able to move. Your body's muscles have deterioated and once your body is put down to bed it becomes heavy and then numb as the circulation of your body slows down and then there is potential for skin break down on any bony prominence like your sit bones, tail bone, elbow, back bone or anything that sticks out. This is where the care giver come in to massage, move and do some range of motion to all extremities. This happens approximately every 2 hours. Another importance of comfort are the positioning of my 3-4 pillows can determine how well I sleep. There have been a few nights where I've had a new care giver who did not know about pillow positioning and could not read lips. We were really in trouble then!
I am very thankful for my team of caregivers (Glizza, Andrea, Keith, Keisha, Renee, Sierra, and Michelle. Backups are Natalie, Daniel). Also to Corey of Care Alternatives and staff who have instructed our care givers in the many nursing aspects for care giving and the vent.
I have to thank Jan for his hard work and persistence in obtaining the best care and fixing everything at home for me! Jan totally ROCKS! I LOVE YOU HONEY!
All in all, it's been a tough road, however I am blessed to be here at home with my family and friends.
Good nite Bella, good nite Violet and good nite Spike! Nana loves you all!
Aloha and God Bless
vi
Friday, May 21, 2010
Vi’s adjustment to her new life with the vent at home is starting to settle in, as is the case with all of us taking care of her.
She has relatively few doctors appointments. The doctors either come to the house or visit her via the camera/internet system we have.
We now have a good group of eight caregivers that provide 24 hour a day comfort for Vi. The caregiving is very intense in that her mouth is suctioned about every 5± minutes. Her lungs are suctioned about once an hour. She also requires constant moving/shifting by the caregiver as she can’t move herself. Toileting, bathing, etc. is all handled in the bed. She is basically in her bed 24 hours a day, 7 days a week except for a few occasions.
Getting out of the bed is somewhat complicated and involves 2 or 3 people. We use a hoyer lift to raise her. It’s not possible to lift her up by hand due to her connection to the feeding tube and ventilator. As other aspects of her care are becoming second nature, we intend to work on getting her out of the bed more often.
We did have a minor emergency situation last week when the ventilator stopped working. The caregiver, Kisha, promptly recognized the situation, got me to help her and began to bag Vi (use the ambu bag to manually provide air to her lungs). After a few minutes, Kisha found the air leak problem. We fixed it and told the emergency people that were on their way that everything was alright.
Another event involved taking Vi to the emergency room at Queen’s Hospital to have her trach switched. The old one was malfunctioning. Getting her ready, out the door and to the hospital required 5 of us as we had to go with vent, suction machine, backup battery, power chair, ambu bag and other related equipment. All went well. Vi now has a new trach.
Vi is using her computer and connection to the internet more and more. However, she still is not using the Dynavox machine which can speak for her. Communication is pretty much handled by watching her lips as she forms words or letters. Some of us are better/worse than others at understanding what she means.
In summary, Vi/we have made a lot of progress since she left the hospital two months ago. Her spirits remain good, mitigated somewhat by the very difficult/uncomfortable situation.
So much for now.
She has relatively few doctors appointments. The doctors either come to the house or visit her via the camera/internet system we have.
We now have a good group of eight caregivers that provide 24 hour a day comfort for Vi. The caregiving is very intense in that her mouth is suctioned about every 5± minutes. Her lungs are suctioned about once an hour. She also requires constant moving/shifting by the caregiver as she can’t move herself. Toileting, bathing, etc. is all handled in the bed. She is basically in her bed 24 hours a day, 7 days a week except for a few occasions.
Getting out of the bed is somewhat complicated and involves 2 or 3 people. We use a hoyer lift to raise her. It’s not possible to lift her up by hand due to her connection to the feeding tube and ventilator. As other aspects of her care are becoming second nature, we intend to work on getting her out of the bed more often.
We did have a minor emergency situation last week when the ventilator stopped working. The caregiver, Kisha, promptly recognized the situation, got me to help her and began to bag Vi (use the ambu bag to manually provide air to her lungs). After a few minutes, Kisha found the air leak problem. We fixed it and told the emergency people that were on their way that everything was alright.
Another event involved taking Vi to the emergency room at Queen’s Hospital to have her trach switched. The old one was malfunctioning. Getting her ready, out the door and to the hospital required 5 of us as we had to go with vent, suction machine, backup battery, power chair, ambu bag and other related equipment. All went well. Vi now has a new trach.
Vi is using her computer and connection to the internet more and more. However, she still is not using the Dynavox machine which can speak for her. Communication is pretty much handled by watching her lips as she forms words or letters. Some of us are better/worse than others at understanding what she means.
In summary, Vi/we have made a lot of progress since she left the hospital two months ago. Her spirits remain good, mitigated somewhat by the very difficult/uncomfortable situation.
So much for now.
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