It's been one of those weeks

[Jimmysmom]

Hi everyone.

We seem to have times at our house when everything runs along smoothly and then at other times when everything is chaotic this has been one of those weeks.

Last Wed. Jimmy had an appt with his orthopedist to check his scoliosis. It has progressed a little since last year, he now has a 50 degree curvature at our last appt he had mentioned that we ought to start thinking about surgery to help correct his scoliosis. We had been weighing the pros and cons and had come to the conclusion that this would be good in the long run for Jimmy. This time the doctors sings another tune saying that we ought to wait till his curvature is 65 degrees. So we are now trying to find another good ped. ortho in VA to get a second opinion.

Last Thursday Jimmy was evaluated for a augmentative communication device. He loved it and really impressed me with his ability to use it. Hopefully we will have a loaner in about 6 weeks for him to try out for three months. I can't wait. Jimmy can say a few words and knows some sign language but this would open another world for him.

Then...... yesterday our nurse, (who has been with us for the past 3 years 40 hrs a week) said that she had accepted another job due to the lack of benefits that the nursing company was able to offer her. I think her husband is about to loose his job so she needs good insurance for her family which I can completely understand, but..... She was at the house when we brought Jimmy home on the vent. She had previous experience with vents and we had received good training at the hospital but the 3 of us(me, my husband and our nurse) learned together about taking care of Jimmy at home. For once in his life my husband has a positive outlook on this thinking that it may be good to have a new nurse with Jimmy. I just worry the we've been lucky for so long with having a nurse that we like and trust to take care of Jimmy and will now have to go through a lot of not so good ones in order to find the right one. If there are any tips you could give me as far as to what basic ground rules I should lay down with the new nurses and anything else I could do to make the transition easier on all of us i would really appreciate it.

Hopefully the rest of this week will bring nothing but happy and relaxed times for us, anybody have any extra Xanex to sell?http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/confused.gif

Thanks for listening

Anne, mom to Jimmy (3) Infantile Axonal Neuropathy, trach, vent dependent, g-tube

[Ann]

Hi Anne;

Sorry to hear about the nursing situation. Â*I can only tell you that when we moved to Phoenix and we got two new nurses for Jack, they were both great from the beginning. Â*So . . . don't assume that you will have to go through a string of bad nurses to get another good one. Â*In fact, one of Jack's nurses, who comes 4 days a week, had just gotten her LPN a few months earlier and only had experience with trach kids, not vent kids. Â*But, to her credit, she understood that I knew my child and she took her cues from me and now she is awesome with Jack. She can fully manage Jack and the vent! Â*

Does your nursing agency have someone ready to replace the nurse, or will they have to find someone? Â*Can't the new agency your current nurse is switching to take take over as the nursing agency so you can keep the same nurse. Â*I know here it happens all the time where a nurse will go from one agency to another just to stay with a kid. Â*Do you have an option as to what agency you must use? Â*I think the biggest thing is to get a nurse in that is flexible and understands that you set the tone of how Jimmy is going to be managed, not her. Â*Your nursing agency should be able to determine ahead of time whether a nurse's personality and yours will mesh.

I've rambled on too long, but know that I had good luck with a nursing change and you have to believe you will too (because I'm not necessarily a lucky person&#33http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/wink.gif. Â*

As for the xanax Â*. . . I hear you. Â*It really helps me out on an as needed basis! Â*

Keep us posted on the nursing situation.

Ann

[christyw]

Anne,

I'm sorry to hear about the nursing change. It could possibly lead to a line of not-so-good nurses until you find the right one again, but it might not. It is quite possible that you will be immediately blessed with someone who either knows a great deal already or is at least so competant in learning quickly and being efficient. I hope this is the case. It's a little exhausting having to teach another adult every little thing about your child and worrying if they will remember it all when you're not around. Trust is such a hard thing too, but your intuition will help you. I totally trust our one nurse. We've also had her awhile, 40 hours a week, but she can still drive me crazy because she isn't always adequate, so it is a difficult thing. At any rate, I hope that everything does indeed, for your family, get back to a relaxed state soon!

christy