Back at it. Sami and Matt had a wonderful wedding! I got to spend time with old friends while making some new ones. ♥️
Upon coming home last night I took over mommy duty and dad’s duty. Afterall, Aaron took over for 4 days straight. I am a still trying to recover from just last night, and the only way I’ll be able to is if Parker has an easy drain night.
I was up every 45 minutes through the night to reposition Parker. We worry about his ability to reach deep sleep as he is being shuffled around all throughout the night. If he doesn’t drain, this could cause worse consequences and his inability to do dialysis would be the worse of two evils. He sometimes feels the drain and lets me know when to wake up 😕
His catheter site is kind of red tonight and Aaron is heading to CVS in town before they close for an antibiotic.
That’s another thing, he had to drive into Boston to get a compound that we couldn’t get anywhere else. Between insurances and pharmacy policies, we can’t order and fill his compounded meds within a good time frame. Poor Aaron was driving around to different pharmacies the whole time I was gone on my trip.
Yesterday I spent a good portion of my trip back trying to get a blood pressure med filled because the pharmacy we intended to use started the script but didn’t finish it in time and then closed!! So we had to pay out of pocket to get it filled at children’s. Luckily we can get reimbursed later, but it was a hassle enough just to get it! And no parent or child should stress as much as we did to get a life altering script filled in a timely manner.
Woof. And also his nap schedule fell off today. And I am paying the price for it dearly. Overtired baby, please please please stop crying!!
on a more positive note, Parker is gaining weight. When he hits 10 kilograms (22 pounds) he’ll qualify for kidney transplant.
When he gets a new kidney, there will be an entirely new set of rules and challenges I’m sure -but I foresee sleep in all of our futures once he has a transplant. No longer will Aaron and I be up every hour of the night trying to get Dialysis to work efficiently enough so that he gets an effect from it.
With such a day, I forgot to mention the exciting milestone we celebrated this morning. One month since Parker has been home! We lucked out with nice weather in the early AM. We FINALLY were able to take Parker for a full lap on the large track at the local park.
I am so so happy to be back with my guys. My incredible baby, and my superhero husband.
Mommy, Daddy, Parker