There is someone that I want to tell you about tonight before I give my update on Pyper. His name is Brandon. He is Pyper’s daddy. This man took on all the events of today by himself. A decision had to be made as to which one would go to the appointments today and which one would stay and work. It has been difficult financially for both he and Nicole to be missing so much work. Nicole had to be at work, so it was a daddy and Pyper day! This was not just a stay at home sort of day …
To take Pyper out of the house requires a whole lot of equipment and planning. You don’t get to just grab the packed diaper bag and dash out the door. You do need the diaper bag, but you also need her portable oxygen tank, her O2 monitor and her feeding machine. You don’t get to just pick Pyper up and put her in her car seat. You have to be mindful of the 3 different tubes that are attached to her and make sure they aren’t kinked, twisted or poking her. After all that is taken care of …
There was a 45 minute drive to Asheville which started their day at 8:00 am, and would later end at 4:00pm when Brandon would come walking into the house with Ms. JoJo. Brandon didn’t just go to one destination with Pyper today, he went to two different places. He carried and lugged all the equipment in, then out, then in and then out. He gave feedings and changed diapers and held his little girl as she was poked at with needles and watched as she had a tests done. This daddy LOVES his little girl and today he is my HERO. I don’t know many men that could have done (or would have done) what Brandon did today.
Okay, so now for my update on today’s happenings:
Pyper had blood work drawn (it took 3 tries before they found a willing vein) for the Endocrinologist (checking ACTH, Cortisol and other levels)
Next it was on to her swallow study (full results are listed below). Basically what they saw today was Pyper is still aspirating, but not as much as before. From this swallow test today, there was a suspicion that she may have something called a trans esophageal fistula (a hole in her esophagus). They were able to get a referral from Pyper’s primary care doctor to order another Upper GI to see if there was possibly a hole beneath her vocal cords. A call to the hospital to see if they could do it today while she was there produced a “yes”, as they just happened to have a cancellation at the right time, and they were able to fit Pyper in! Yipeee! Not so sure Brandon was rejoicing at that exact moment, but this saved them from another missed day of work, and another trip to Asheville. We are always looking for the good in a situation. 🙂
Brandon got home with Pyper in just enough time to settle her in before a nurse arrived at the house to do a 2 hour assessment on Pyper. This is in preparation for a home health care RN. In between them getting home and the nurse arriving, I had a little bit of time to hold this little one. As Chloe and I were talking to her, she began to smile, and then she began to giggle. Yup, straight up giggles. You have to listen very carefully because Pyper has almost no voice, but as we listened you could hear the sweet sound of her giggle … and you could see it in her eyes as they lit up with a twinkle.
I can not report tonight that Pyper gets to have her NG tube taken out, or that I can give her a bottle, but things are better, and healing is taking place. I am humbly reminded today that my (our) timing is not that of the Lord’s. But this one thing I know … God is good, He is faithful and He is taking care of Pyper Jo. The prayers will not end just because the swallow study is done. No, indeed they will continue on!! Thank you to all who prayed for Pyper today.
Today I am THANKFUL that Pyper has her very own HERO…her daddy.
Today I am THANKFUL for Brandon…a daddy that would do anything for his little girl.
Today I am THANKFUL for baby giggles that are received just when you need your spirits lifted.
Doctor notes from Brandon:
Mindy – Swallow Study
- When given 0.5 ml swallowed safely
- With nipple still aspirating, but smaller amount
- Aspirating below vocal cords
- Trans esophageal fistula possibility … Mindy going to ask Dr. Roberts if he went down that far to see below vocal cords …
- Will have to check with pediatric radiologist
- Mindy is wondering if she has really bad acid reflux and it could be possible that her coughing episodes could be linked to reflux
- There were no signs on a trans esophageal fistula (hole in her esophagus)
- Follow up with Dr. Roberts on 11/21/17