I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Monday, February 25, 2013

Baby Zoey & Extended Stay in Louisiana

Doing what Aunt Kelli does best - harassing baby cheeks

My precious little punkin, Zoey, is in NICU at the moment. She was fine the first 24 hours after birth, but then her sats dropped out of nowhere. The situation was resolved, but her O2 is not stable while she's sleeping.

Apnea is suspected, so they will conduct a sleep study Tuesday overnight. It could be Friday before the results come back, and she could spend another week in NICU after that while treatment is discussed and put into action.

This has been unexpected, as Zoey's vitals were spot-on at birth. Born a couple weeks early, but the doc admits to possibly being a bit off on the due date. She was 7.5 pounds and 20 inches. Perfect. We do realize our family has a history with sleep apnea and sudden infant death, and that has been made known to the medical staff. My brother and sis-in-law are understandably very upset, but I admire their strength more than they know. They are amazing parents, as I knew they would be.

I intended to only stay in Louisiana two nights, but I've been here since the 19th and will be staying through March 2nd. I appreciate my brother for letting me live on his couch this long. I've done my best to stay out of the way and help out as much as possible...rolling walker in tow.

Pray for Zoey. She's the sweetest thing in the world and I love her so much.

Wednesday, February 20, 2013

OPERATION ZOEY IS COMPLETE!!!!!!!!!!!!!!!!!!!!!

Thank you God for letting me live to meet my
sweet, beautiful, perfect niece,
and thank you for the privilege of being her Aunt Kelli.

Monday, February 18, 2013

Local Clinic Follow-Up

This is a medical post and may contain TMI. Fair warning.

I finally returned to the local clinic and saw Dr. B, who ordered the heart monitor for me last month. The results were exactly what I was expecting. Yes, I'm having some arrhythmia. No, there's nothing that can be done about it. So that's the end of that. Quick and painless, I suppose. I'm so glad to be off of the monitor because that thing was driving me absolutely batty.

We spent a good bit of time discussing other things. The aggressive treatment I'm on, the side effects, and the fact that I'm needing a local doc to take over my care...mainly script-writing. Now that relatives have stepped out of the picture where my medications are concerned, I'm up a creek unless Medicaid agrees to pay for everything. I literally don't have the funds to pay for any of it.

I have yet to successfully titrate the acetazolamide to the dose Dr. F wanted me on, but I'm still trying and I'm not going to give up. I am encouraged by the fact that I am no longer waking up in a state of paralysis. Yes, I still have paralytic attacks regularly...some of them serious...but I used to wake up paralyzed every single day. Since getting the acetazolamide in my system, that hasn't happened. That's a good thing, and in spite of the fact that it isn't improving my general weakness, and the side effects are very difficult if not unbearable at times, the conclusion is that I need to stay on this drug. I'm also still on everything else, and I'll write a separate post about meds and side effects later.

Dr. B is concerned about my kidneys, so he ordered a work-up and gave me a month of samples of Detrol to deal with some bladder issues I've been having. I've also been dragged against my will into an OBGYN appointment...boooooo! I don't want to go, and the nurse said they can't force me to, but they really want me to and gave me an appointment whether I liked it or not. Ha.

The great news is that he had no problem agreeing to rewrite all of my scripts. They've been turned in, and I will find out tomorrow whether or not Medicaid is going to cover them all. Pray hard, brothers and sisters.

I appreciate everyone's thoughts and well-wishes, always. You are all a tremendous blessing in my life.

Tuesday, February 12, 2013

Random Encounter

A young lady approached me in public recently, and we had a remarkable conversation about my condition.

Her questions were bold and honest, and she is the first person who has ever asked me if I'm scared.

Really caught me off guard, and although I think I stumbled on my words a bit, I loved the conversation and we both wished it could have continued.

She said she was inspired and thanked me for answering her questions, and I replied that I appreciated her time and genuine inquisitiveness.

We went our separate ways with feelings of gratitude for what was such a random encounter.