Dearest Prayer Warriors for Joseph,
A blessed Sunday to each of you. I saw it was a gorgeous 70 something degrees here in Houston, Texas today. From the window I saw a lot of blue sky but we weren't able to get out to enjoy it unfortunately. Rob, Joseph and I have been surviving the staffing crises at the SHOR though. I must admit I've never been so thankful for rest in my entire life whether it's 10 minutes or 4 hours. We supposedly have both of our night nursing positions filled but we've been burnt so many times we can't breathe a sigh of relief yet. Both of the young women are recent Associate Degree Registered Nurses. One of them is a very old family friend. We've known her family for 20 years. She and Audrea, our #2 daughter, were very good friends growing up. They car pooled to high school and cheered together. We'd lost touch with their family over the years but when I saw on Facebook that she'd just become an R.N. I messaged her right away. It just so happened that her husband works nights and she was excited about the prospect of having hours that mirrored his. Long story short, she gave her notice at her current place of work and will begin taking care of Joseph beginning on Valentine's Day. We really wish she would have been available to begin immediately but she's definitely worth waiting for as she's a very bright nurse, very enthusiastic for the opportunity to perfect some high level skills and I hope very loyal to the cause. She came for a couple of hours 3 times last week to begin learning the most important skills needed to take care of Joseph through the night so it won't be as painful for us staying up with her through the night when she can finally start. It's been a lot of fun to catch up with her too.
By the grace of God an old nurse filled in for us twice last week and sweet Gloria, one of our newer caregivers, worked Saturday night. That left Friday and Sunday nights for Rob and I to tag-team training throughout the night the other new nurse. They are both 16 hour shifts so it is exhausting being on your feet non-stop, talking, demonstrating, correcting and trying to explain all of Joseph's complicating conditions and how to respond to each of them. The other nurse is a very close friend of the first one I told you about. They went all through nursing school together. She is also a very bright nurse, eager to learn and very ambitious. My fear is that she had just accepted another position before I found out about her. It's a week day position and she can make her own schedule but it has some pretty nice perks that I pray don't out weigh the blessings of taking care of Joe Man. She is also working on her BS RN, has 5 kids AND lives on the other side of Houston. She assured us this is normal pace for her. Regardless, please pray for our "Super Woman Nurse" that she can somehow get all the rest she needs in her busy life to be able to pull two 16-hour shifts on the weekends and still take care of her family. Please, please, please pray that all 3 of our nurses find great reward in learning all the skills necessary to take good care of Joseph and the angelic work they're blessing us with and DON'T LEAVE US.
We're in a holding position on the caregiver I hired 2 weeks ago. We're supposed to find out tomorrow how much time he'll be able to commit to us. Pray that it will all work out because one of our caregivers is going on vacation at the end of February and it's possible that I'll have no help 1 of the days she's gone. It's a very scary thought.
We met with the epileptologist last Monday and we discussed the options. He said it is best to try to titrate up on the Lyrica since we believe it was working rather than abandoning it and starting an entire new anti-seizure medication. So we are trying to increase the dose but very slowly so we don't knock out Joseph's breathing response due to sedation. However, we're battling with the insurance company over a liquid version of Lyrica so we can titrate it slowly. The smallest dose available is in 25 mg. capsules. 25 mg is not enough but 50 mg knocks out Joseph's breathing reflex because of it's sedative affects so we have to find a perfect dose between those 2 units. When you break open the capsule and mix it with water you see all the medication floating around in particle form. It's impossible to get an accurate dose like that. We were denied twice last week even though the epileptologist spoke to the insurance company directly. He's now requested a "Peer to Peer Review." Please pray that the epileptologist is given the wisdom to know how to convince the insurance company that the liquid form of Lyrica is completely and totally necessary.
I updated you recently on Gabrielle. Please continue to pray for her. A little news from the rest of the family.......Audrea officially resigned her position at William Morris a couple of weeks ago as she's decided to go to nursing school even though she's not even been accepted yet. Right now she's finishing up some prerequisites and hoping to be accepted in the fall to Belmont's nursing school. She received her BBA in Music Business at Belmont in 2012 and ironically we toured the nursing school when I went with her for her official visit in 2009. Who would have ever dreamed she'd be returning to go to nursing school? The essay she wrote for the application is very touching. As you can imagine Joseph's journey is her complete motivation for pursing a new career. It's a 16 month Bachelor's of Science program and will be eligible to take the NCLEX to be come registered immediately upon completion of the program. She should find out if she's been accepted in the next couple of weeks. With Houston having the world's larges medical center I'm praying she'll bring her skills and love to Houston one day....SOON!
Living in the nightmare we've been living for months now, the LORD brought the most incredible ray of sunshine to our home recently. I've been afraid to say it out loud for fear something would happen but it's now official so I'm going to dare to share our good news. Over Thanksgiving the girls and I were in the car driving home when Madeleine received a phone call from a gentleman she'd worked with briefly in bidding on medical equipment with hospitals in Minneapolis. He's with a surgical robotics company and asked her if she'd like to interview for a position that was becoming available in Minneapolis. She was very intrigued with the product so agreed to check it out. Long story short as she studied the company and products she became more interested and progressed through a series of interviews including a day of scrubbing in for a day full of surgeries at several hospitals here in Houston while she was home over Christmas. In the end they offered her a position and she accepted it with the hope that one day she'd be able to transfer to Houston. It was certainly not an easy decision as she absolutely loves her job, her boss and her company but there wasn't much hope of her returning to Houston any time soon. She dreaded telling her boss because she felt such an indebtedness to them for giving her a start in the medical device industry. In the end the V.P. of Sales from her current company called her and told her that they are a family, that she's a "rock star" and they didn't want to loose her. The VP proceeded to offer her a position in a different division of the company IN HOUSTON, buyout her 15 month apartment lease that she had just renewed, pay for entire relocation, hire a Realtor to help her find a home, and pay all closing costs and expenses associated with the move!!!! I truly couldn't believe my ears. I received the information in a text and thought it was a terrible hoax when I couldn't get a hold of her. When I was able to confirm the tears didn't stop. I could NOT believe it! Soooooo Madeleine should be back in Houston by mid April and we couldn't be more excited. I'm thankful for the words of Job in verse 17:12 "They make night into day, saying, 'The light is near,' in the presence of darkness."
Thank you for all the birthday wishes for Joseph. The cutest thing happened. I had just showed the new nurse his vocalization log and taught her how to document his intentional vocalizations. Not an hour later she came to the kitchen with great big eyes and a smile on her face and said "Joseph and I just had a 'conversation' about his birthday!" When she asked him how it was he vocalized several times! He has been talking up a storm for the last 3 weeks. On Friday alone he vocalized 87 times! In the past 12 days he's vocalized 373 times! The really cool thing is that he's modulating his voice in different tones a lot showing great expression in what he's trying to communicate. He was fussing at us last Thursday a lot while we were dressing him. When we got him transferred to his wheelchair he let out another loud vocalization so the new caregiver said "Joseph are you just mad at us?" He immediately vocalized with a very angry sound! On Friday he was running high heartrates and posturing so Kristen, his OT, was working her magic getting the knots out of his muscles with these really cool therapy balls. Toward the end after she did an amazing job all over his upper body he vocalized twice in the sweetest voice I've ever heard from him. We are sure he said "thank you." Thank you Jesus for these rays of "sonshine" you send us in our darkest of hours."
In closing I'd like to ask you to pray for another one of Joseph's mighty prayer warriors. She has done spiritual walks for Joseph asking for the prayerful intercessions of Blessed Father Emil Kapaun in Wichita, Kansas. She has held Joseph in her most fervent prayers since almost the day of his accident. Her name is Julie and she's Aunt Debby's best friend for the past 50+ years. She recently suffered a stroke and has some great limitations. We want to return those prayers for Julie and her family as they traverse these uncertain waters. She's always been the spiritual backbone of her family and this has certainly rocked the foundation of their lives.
Many, many thanks for all you do to cover us in your continued prayers. We are forever indebted....
Blessings to you and all you love,