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.