Just like anything new, after enough time a new normal is established. Even having nurses in our home 24hrs each day has eventually become what we are accustom to in our daily life. However, when that normalcy is interrupted, so is our routine. Over the weekend, we were without our night nurse on both Saturday night and Sunday night. Finding replacement nurses is difficult in home health, but coming up with fill-ins who are qualified to care for "high risk" patients on both a trach and vent are nearly impossible. Even though we knew it would be a long shot, we asked the nursing agency to please try. Unfortunately, they were unable to come up with a replacement and mommy/daddy became the night duty nurses.
I feel like this is something we are both quite capable of doing, and we did do this for a month and a half returning from BOCH (Baylor Our Children's House) until our current nursing staff was established. However, Saturday morning I ran in a half marathon just north of Dallas and then drove home to enjoy some exciting college football games. I was extremely tired and planning to hit the hay early on Saturday night...this did not happen. We received a phone call from the nursing agency at 7pm letting us know that our night nurse (who usually arrives at 8:30) was ill and would not be able to work. This is completely understandable, and we would never want to risk Drake being exposed to germs or illness. Despite being tired, we had a nice family evening complete with our family of 4 sitting around the dinner table. After Kennedy went to bed, Brian and I watched some football in the living room with Drake. I took the first night shift and Brian took the 2nd. After our day nurse arrived, I headed back to bed for some additional zzz's. Luckily for me...Kennedy slept pretty late on Sunday morning.
Early Sunday afternoon my phone rang during trach care. I was busy so whoever it was would have to wait for a call back. Immediately following that call Brian's phone began ringing. Ok, this must be important. I could only hear Brian's half of the conversation, but I deciphered enough to know our other night nurse would not be in on Sunday night. She was out with a severe migraine. After trach care, I headed to our room and did my best to take a nap. I was resting up for the night shift. I'm very glad that I rested, even if it was just for a short time, because Drake did not sleep very much on Sunday night. Consequently, I did not sleep very much either. I took the entire night shift because Brian had to get up and be out the door early on Monday for his work day. However, thankfully he did get up with Kennedy when she woke up in the middle of the night due to the thunderstorms. Also, both of our day nurses helped out tremendously. One stayed late and the other came in early.
Despite the lack of sleep on Sunday night, Kennedy, Harper and I headed out early to visit my great-aunt at a nursing home in Fort Worth. We already had this planned and I did not want to cancel. We met Gran(Mimi) in Mesquite and she rode with us for the remainder of our journey. We girls had such a fun day! We had lunch with my mom's cousin (which makes her my first cousin once removed, but that is very confusing). Then we headed to the nursing home to visit my great-aunt (Drake and Kennedy's Great-Great Aunt....I think). She is 90 years old and she looks fabulous! Kennedy was enthralled with her collection of colored stemware that she had arranged in a vibrant pattern along the windowsill. It conjured up warm memories of those same glasses in her home when we would visit as a child. It was a very special moment for me having my sweet great-aunt meet Kennedy. I only wish Drake could have joined us for our trip.
This brings me to Tuesday, which did not feel like a Tuesday to me at all. In fact, I thought it was quite strange yesterday when I saw my neighbor's trash can at the end of their driveway. Once I realized it actually was trash day (Tuesday), I had definitely missed the trash man. Oops! Brian is thankfully home almost every single night now that he has switched to covering the East Texas market instead of the Dallas market. This is fantastic! God is good! However, having him home on a Tuesday is one more reason that my normal has been thrown off this week. Therefore, all of these mixed together are the reasons why this particular blog is being posted on Wednesday instead of Tuesday...I completely forgot.
Drake has been hard at work with his therapies and increasing the time he uses his PMV (Passy Muir Valve). He is doing great in his stander even though sometimes he refuses to lift his head. When he does this, we simply tilt him back a touch to decrease how much gravity he is working against. Kennedy still loves pushing him all over the house and has worked out her own method of steering.
Just "standing" around in the kitchen!
Bedtime story with Daddy!
Uncle Aaron & me at the finish line! I couldn't smile because I was busy eating the snacks and refreshments!
Kennedy with Cousin Sharon!
Kennedy and her Great-Great Aunt Jane Ray!
This is Drake's "I don't want to lift my head" look
Gotta love a random selfie surprise on my phone!
