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Thursday, November 30, 2017

Pyper turned 5 months old today!!  What a pure and lovely blessing she is to our family.  Oh what a journey she has taken us on.  The road ahead may be unclear and it may have its “bumps” and “curves”, but I know the One that directs our path and I fully trust in Him, for He is faithful.

I ended up with a day “off” today since I did not have Pyper to take care of.  I got a lot accomplished, but I would have rather been holding my littlest oneIt is so hard having her so far away.  I remember complaining that Asheville was far away and it is only 45 minutes.  Now she is 5 hours away.  It all takes its toll.  Nicole misses Gavin and Chloe, and they want to see their mommy.  Dean and I try to fill in as best as we can, but it still isn’t the same. 

Pyper had her sleep study last night, and was disconnected at 6:00am.  Nicole sent us a picture of her that she had taken last night after they got her all “wired” up. (see full results of her sleep study below).

The results of the Echocardiogram that was done yesterday are listed at the bottom under doctor notes..

Tomorrow will be a BIG day for Pyper and a hard one for Brandon and Nicole.  Pyper will be put under general anesthesia and they will have to intubate her.  The ENT will do an airway evaluation and laryngoscopy, providing them with a 2nd opinion and potential repairs if they find anything.  Then the Pulmonologist will do a bronchoscopy of her lungs.  Both have been given permission to do procedures they deem necessary while they are doing their evaluations.  This is set to take place between 1:00 – 3:00pm tomorrow, so we cherish your prayers during that time.  These are the times that I especially wish that I could be there for Nicole. Just to be able to sit with her.  Unfortunately, the distance won’t allow for it this time.  

It has been mentioned that they may be able to discharge Pyper Sunday evening.  I am guessing it all depends on how she does tomorrow, what they find and do during the procedures, and how quickly they can take the intubation tube out.  Only time will tell.  We are needing answers as to what is causing her breathing issues and her continued aspiration issues, and we are praying that we will have some tomorrow. 

Today I am THANKFUL for the Pediatric Cuddler that came and rocked Pyper so that Nicole and Brandon could get out of the hospital for a bit.  They have what they call a Cuddle Team … isn’t that awesome!!

Today I am THANKFUL for Pyper and the beauty that she adds to our world. 

 

Doctors notes:

Dr Fan Neurologist 11-30-17

  • Sleep study was technically challenging because it was portable and not in the lab.
  • Has mild apnea in the apnea range
  • Examples for a ten year old kid they pause for 20 seconds and detat down to 89
  • During the study stats a little bit lower in the study …lowest was 89. Has tendency to drop her stats with movement or apnea.
  • When a little older a few months older do an in lab study .
  • Recommended possible nasal steroids to help open up airway.
  • Sleep study confirms she easily drops her stats and that it’s related to her underlining disease.
  • Respiration was like 50-60 when she was asleep
  • Hopefully it will improve over time

 

Echocardiogram results

  • Echo shows mild pulmonary stenosis at Sinotubular ridge junction
  • Pulmonary stenosis is a condition characterized by obstruction to blood flow from the right ventricle to the pulmonary artery. This obstruction is caused by narrowing (stenosis) at one or more points from the right ventricle to the pulmonary artery
  • Children with mild pulmonary valve stenosis rarely require treatment. Patients with mild pulmonary valve stenosis are healthy, can participate in all types of physical activities and sporting events, and lead normal lives.
  • Mild pulmonary valve stenosis in childhood rarely progresses after the first year of life. However, mild pulmonary stenosis in a young infant may progress to more severe degrees and requires careful follow-up.

 

 

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