Changes

I hate change. I know change is necessary & happens all the time but I still hate it & I fight it all the time. I am trying to get better about it but I still get anxiety over change. The other day my day nurse came to work & told me she wants to cut her hours back from working 5 days a week to only 3 days starting in March. Autumn goes to school 5 days a week so I was a little worried what we were going to do. I got upset & vented but that night I just went to God about it. He is in control, he knew this was coming. Maybe this is going to be a blessing in disguise. I actually did not lose sleep over it like I usually do when I'm stressed about something & don't have the answers. I did some brainstorming about all our options. We finally decided Autumn would still get her 15 hours of school in each week but just do it in 3 days instead of 5. She will go from 10am-3pm on Mondays, Tuesdays, & Fridays. This will give my nurse her 3 days she requested, still give Autumn her 15 hours of school, work around her outpatient therapy she has on Wednesdays & Thursdays, allow James to still work overtime on Mon/Fri mornings, & allow me to continue to work on Tuesdays/Fridays. I'm so thankful we came up with a plan that works for all of us. Next school year we may have to hire a new nurse because I would like for Autumn to go to school 5 days a week with the same nurse but we have a few more months to deal with that. I am a little nervous that "P" may be coming to live with us during the transition time of Autumn's nursing hours changing but once again God is in control & He will get us through it. About "P", we are still waiting for them to schedule his psych evaluation. In the meantime, we will be updating our home study & filling out the paperwork for subsidy so when the psych evaluation gets done then we can move forward. I just found out today that "P" is in the hospital & had surgery on Friday. Makes me sad I could not be there for his first surgery to comfort him. :( I'm so ready for him to be home with his family. Today Autumn had a dental cleaning & vent clinic. I always dread cleanings but love how white her teeth look afterwards. We usually go every 3 months but tried a 6 month break between this time. We learned not to wait that long, her teeth get so yellow with build up so we are going back to every 3 months. It's a fight & takes 5 of us to hold her down. She did really good this time which means she did not turn blue or desat one time on us. She also did not bite anyone this time either. She did cry & fight but we managed to get them all clean. Vent clinic was easy this time. No changes to food, vent, or meds. They did give us a script to give us a cuffed trach. This will hopefully allow us to deflate her trach during the day so she will have a leak around her trach tube & be able to make some noise. We will inflate the tube at night so she will not have a leak & not set the vent alarms off at night. I have no clue if Autumn has damaged vocal cords so we are not sure if we will be able to hear her make noises or not. The other day at church we were asked, "What would be the one thing you would want if you could have anything?" My answer is to hear Autumn make noise & talk. Not being able to communicate with Autumn breaks my heart. I want to be able to hear what she wants or needs. To hear her laugh or squeal. Every so often we get to hear a cry & it makes me smile every time. If she never walks or eats by mouth, not such a big deal but to not get to hear her voice makes me tear up every time I think about it. I would give anything to hear her so I pray this cuffed trach will give me that miracle. We also learned at vent clinic that we should have 2 suction machines. 1 stationary & 1 portable. We have always just had a portable suction & they had never realized this. They want us to have 2 because if one dies on us, we are out of luck. Thankfully God has watched over us for the past 4 years & the one time our suction machine died, we were at home & it worked as long as it was plugged in but we were not able to go anywhere. However, our DME company is saying that will be hard to get approved through insurance so we will see what happens. Everything else looked good to the drs so it was actually a short 2 hours appt. That has NEVER happened at vent clinic, usually is is 3-4 hours long. So it was a good day of appointments.