More Nursing

Kaitlyn has FINALLY been given more nursing hours. Home Care has finally arranged with VON services for more nursing hours for Kaitlyn. We were getting three hours twice a week for respite visits from a VON nurse. We were told that Kaitlyn requires visits from a Registered Nurse, my understanding is that nobody else has the necessary qualifications or training to deal with her level of care. Even the VON nurses here have never dealt with a child using a cough-assist machine and bi-pap. I haven't met a single VON nurse who has even heard of the cough-assist machine before arriving in our home.

Home Care decided to request morning VON respiratory services. We now have a nurse in our home every morning Monday through Friday from 8:00am until 10:00am performing all her respiratory treatments. So far it has been working out OK. They were supposed to send Kaitlyn's regular nurse in this week, and start introducing more nurses for training next week. But the last two mornings we have had two nurses, Kaitlyn's regular nurse and a newbie. It has been tough on all involved! Poor Kaitlyn is just trying to get used to having somebody else get her out of bed in the morning. Now, she has to tolerate having a new nurse practice using the cough-assist on her and learn how to suction, carry and position her. As she is still really a baby she gets a little nervous when they don't know what they are doing!!

The first new nurse was a "swirler". This term is coined by another SMA Mom. (Thanks Jennifer). The nurse is used to dealing with a trach and when you suction a trach you swirl the catheter around in a big circle the diameter of the trach tube removing any secretions as you pull the catheter out. Well....as you can imagine, poor Kaitlyn opens her mouth to get suctioned and has a catheter placed to the back of her tongue and pulled out in big circular swirls. SHE WAS NOT HAPPY. She cried through the rest of the cough-assist treatments that were done that morning!!!

The new nurse that arrived this morning was much better! I couldn't have picked any faults with her visit. The biggest issue is that one visit is not enough to learn Kaitlyn's routine. Let alone learn all of the minute little details that are part of taking care of Kaitlyn. Our regular nurse is off on Mondays so I am interested in who they're going to send to replace her this coming week. It should be an interesting morning.

I'm hoping that this all works out as it gives me more time in the mornings, one of the busiest times of my day. It also means that my boys will now be supervised in the mornings. No more running wild for two hours while I deal with Kaitlyn.

Saline nebs are still working out really well. I cannot believe the difference in her. I haven't added the afternoon neb yet. I have been thinking about it, but she has been so good thorugh the afternoons the past few days that I don't really want to change anything yet.