Update From the 10th Floor

Today, Jayde experienced some setbacks in her recovery. Yes, they are to be expected. Still, it does not make these setbacks any less frustrating for the girl lying in the hospital bed or the mama who cannot do much to change it. The day started with a new nurse who knew nothing about SMAS and very little about POTS. "Umm, no, 73 is not a normal HR for her, even when she is resting. Please check again." "115, ok, that sounds accurate." After Nikki and Shannon knew what we needed, without us saying a word, never allowing Jayde's medication to lapse or making Jayde feel she was a less important patient, it was a day full of adjustments.

Jayde's fluoroscopy test was an adventure. She experienced a resident who was not confident in her skills, along with a callous doctor who needed to have a refresher in empathy and bedside manners. Besides the obvious, to see if her surgery was successful, we discovered the Ng tube was inserted too far. Thus, it was not draining the correct portion of her stomach. The meaning of this new discovery: Jayde's tube will not be removed today, as she anticipated. Her new nurse did not earn any brownie points when she had to pull out the tube several inches, causing Jayde to almost vomit and inflicting more pain. (Though this was not the nurse's fault, nor could it be helped.) Speaking of pain, all the necessary movement has increased Jayde's pain level, combined with late medication dosages and an inattentive nurse,
 all equals no walks today. 
I was beyond grateful to have one of Jayde's besties visit and allow me to walk outside for a few moments. Thank God tomorrow is a new day.

Now for the good news
Jayde's surgery was successful. There are no leaks and a nice large bypass for anything she wants to eat when she is finally allowed to eat real food. Barring any more setbacks, it looks like we could go home on Thursday or Friday.

The first photo is from last night with nurse Shannon. The second picture is from this afternoon.


Popular posts from this blog

Allies of Love

In A Perfect World, There Would be More Answers and Less Questions

Rare Disease Day 2024