First, our day started crappy yesterday.
At 7am I hook Emily up to her feeding pump for an hour because usually she is asleep and that way I can get an hour of sleep to. So I got up put her extension on started the pump and back to sleep I went. The pump was down an hour later and Emily was stirring around. I put my hand on her and she was soaking wet! My first thought was that she peed, I turned her to her side and the bed was soaking wet too! I instantly grabbed her extension and I did not hook it up right so for an hour 6 ounces of formula ran into my mattress!!!
Then I get her up and start getting her meds together, the nurse comes in and I get a phone call from the nursing agency. Medicaid has denied my nursing coverage. The nurse has to leave immediately. Mind you I have had 1 hour of sleep so far and Emily has a neuro appt at 1:30pm.
So quickly before the nurse leaves I took a shower and got ready and made some more phone calls and then off to the appt we go.
The appt was great. The result from her last eeg was so much better. She did not have any seizures during the eeg. This is the first time she has ever done that! We are also weaning her clonozepam (klonopin) too. Hopefully in 10days she will be completely off of it.
We also go the results of some testing she had done in Cleveland. Emily has a vitamin D deficiency which if common in kids who are not in the sun much, so we need to add that supplement. Another one of the genetics was normal, another they did not have enough blood to do it so we had to go the lab after the appt and get it redrawn. We were at the lab for almost 2 hours. I was so tired at this point. I did not leave the hospital until after 5pm. I rushed home, Joe had some dinner ready for me, I shoveled food in and fell into my bed for a few hours and now I start my day all over.
I am so thankful we met emily's nurse. She is more than Emily's nurse she has become a friend! Besides Joe, myself, and her nurse we have no one that can take care of Emily. No one knows anything about her diet, meds, seizures, g-tube, and therapies. So we are so thankful for her because if there is ever an emergency with Joe or myself I know we can call her.
It is hard when the people you are supposed to count on choose not to be the people you always thought they would be or should be.
It's amazing how having a sick child really filters the people in your life. At the end of the day you really know who you can count on.
Well I am hoping we can get this medicaid issues resolved quickly and get her nurse back. We are looking forward to a fun weekend!
Emily laughing in her sleep.