Home at last!
Pyper was discharged late yesterday afternoon and they arrived home around 10:30pm last night. It has been a long 10 days …
10 days of:
- hospital food
- being confined to a hospital room
- being away from Gavin and Chloe
- 7 days of missed work for both Brandon and Nicole
- not sleeping in their own bed
- not sleeping well
When they left home a week ago Sunday, it was supposed to be just an over night trip. It turned into much more. This past week has been a whirlwind of doctors coming and going.
I am sure that Brandon and Nicole were overwhelmed at times with the amount of information that was shared with them. Words were spoken that neither of them had ever heard before (thank goodness for Google)!
Pyper has an incredible team of doctors that worked tirelessly these past 10 days to try to figure out what was causing her breathing issues. This past week has been the first time that our prayers were actually asking for something to be wrong, as it was our hope that they would find the reason that she struggles so hard to breath. The end results show nothing majorly wrong. Don’t misunderstand, this is good news too, it’s just that if they found something, we were hoping it could be “fixed” so that Pyper could be free of needing supplemental oxygen.
But since they did not find anything to “fix”, she ending up coming home on a higher oxygen level than when she was admitted. This will allow her to breath a little easier.
Here is the recap and summary of what this past week at UNC Chapel Hill Children’s Hospital provided:
- Pyper has obstructive apnea that is in the back of her throat / pharynx. This basically means her airway collapses when she sleeps (explains why she needs the oxygen when she is asleep but not when she is fully awake). Nothing can be done right now to fix this other than to monitor her nutrition and calorie intake to make sure she isn’t burning more calories with her breathing than she is taking in.
- She will need another sleep study in two months.
- She needs a higher flow of oxygen to compensate for her rate of breathing. They were told from the airways team she will grow out of supplemental oxygen as she grows and gets stronger.
- Pyper will have surgery in January for her Gtube and Lads procedure (tacking down her bowels). The doctors have told them that they should plan on Pyper being in the hospital one to two weeks. UGHHHHHHH. Not something that anyone is looking forward to.
- Pyper has been approved for full time care by an RN (while Brandon & Nicole are at work). Now they need to find one.
- Physical protection over Pyper. Because her body’s immune system is compromised, she can easily end up in the hospital if she gets sick.
Today I am THANKFUL that Pyper, Nicole and Brandon made it home safely.
Today I am THANKFUL for Pyper’s incredible team of doctors (here in Waynesville, Asheville and Chapel Hill)
Today I am THANKFUL that Gavin and Chloe will have their mommy and sister back home with them.
Today I am THANKFUL that I will get to hold my littlest one this afternoon 🙂
One Reply to “Wednesday, December 6, 2017”
We are still praying. Still asking God to strengthen you and surround you with His love and care. We are asking for Pyper to flourish and use her nutrition to the fullest, to grow stronger, so that the oxygen will not be needed.
We are asking for you to be able to find a wonderful, caring, capable nurse.
And we are thankful that Pyper has such a strong, faithful and loving family.
Oh yes, and we love you too!