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Monday, November 27, 2017

The car, filled with all of Pyper’s equipment, Pyper, Nicole and Brandon left the driveway early Sunday afternoon and headed toward Chapel Hill.

They had a 5 hour drive ahead of them. This morning would bring them to UNC Chapel Hill Children’s Hospital, where they were to meet with a doctor from the Complex Critical Care Team. They fully expected to be at the hospital for a good part of the day as Pyper was evaluated, questions were asked and answered, specialist assigned to her team and a care plan discussed, set-up and put into place.

Things never go as planned and today was no exception 🙂 I say this with a smile on my face because I am truly learning to expect the unexpected. Pyper’s appointment was at 9:40am and by 11:50am the doctor’s had decided to admit Pyper out of special concern regarding her respiratory breathing rate and retraction. They want to get things figured out, and by admitting her it would be a quick and efficient way of getting her team of doctors all in to see her. If it was done on an out patient basis it could take a couple of months. So, while unexpected, it is a blessing. A great big blessing!! Our prayer for this appointment was for 2nd opinions and a plan of action to be put in place that would provide answers. God delivered on these prayers! Although Nicole and Brandon thought this was a one night adventure it has turned into at least 2, but probably 3.

I have included Brandon’s detailed notes below from today’s visit. Since Brandon sent me his notes there are a few more things to share. Respiratory came in and said her issue is something in the upper airway Twice this evening the nurses came running into the room when Pyper’s O2 levels dropped below 70. As I write this entry (8:50pm) they have just come in and drawn blood and are now taking Pyper for a chest x-ray (checking for pneumonia and any kind of abnormalities). I guess 9:00pm at night is a good time to do these things! Tomorrow will bring about a whole team of doctors that will be evaluating Pyper. Please be in prayer for wisdom as they work to figure out what is going on and how best to move forward. We are believing in healing for Pyper, but God can use the hands of doctors to provide that healing too! I will give an update tomorrow evening after Pyper is poked and prodded and sent for tests and more tests. And through it all she remains a happy little girl.

Right before I started to write my entry for tonight I set up a Go Fund Me Campaign to help Nicole and Brandon with lost wages as they continue to miss work and for travel expenses as they are away from home. Up to this point, they have missed 13 days of work. I knew that there would be many more days missed in the future because of doctor appointments and daycare issues. Pyper’s primary care doctor has told them that Pyper can not be put in a daycare environment. Her body systems are too compromised, and if she gets sick it will put her back in the hospital. I could see the stress that it was putting on them and I wanted to do something to help. I knew that there were a couple of people that had already given Brandon money to help with expenses and I thought about all the other people that have asked us “what can we do to help?” So, Pyper’s Journey on Go Fund Me was birthed.

As I was typing away I got a notification that the first donation had been made. Wait a minute, WHAT? I couldn’t believe my eyes. Someone had made a $100.00 donation. I literally started to tear up. Then another donation came across my computer screen. This one was for $300.00. I was now crying. These two donations came from people that know Dean and I (one of them doesn’t even really know us, but attends the same church as we do) and they know OF Pyper, Nicole and Brandon, but do not know them personally. I was so amazed by their generosity and their sacrificial gift to my daughter and her family. God is so, so good.

Today I am THANKFUL for a team of doctors that are “ON IT” and are not going to quit until they have answers.

Today I am THANKFUL that Pyper was admitted to the hospital.

Today I am THANKFUL for the finances that God blesses people with, and they in turn bless others with it.

Today I am THANKFUL for a baby girl that smiles through it all.

 

Brandon’s Notes:

  • Pyper Chapel Hill – Elizabeth Walters NP student for Dr. Maria Ferris 11-27-17
  • Oxygen still on?
  • Refluxing?
  • Vision?
  • 11 pounds 11.7 ounces
  • 58.5 cm long … 23 inches
  • Admit to Chapel Hill…they did not like how she was breathing… also being admitted to the hospital will speed up her seeing a bunch of specialists and get the team approach
  • Dr Cecil who is a senior resident was in and spent a good while and they asked what our main concerns were. We informed them that aspiration and oxygen were our main concerns. They are going to have neurology, pulmonology, endocrinologist, feeding team, GI, airways, and ENT all come see her.
  • Dr. Julie Byerly is the attending she came in and saw her . Her main concern is her breathing and that she isn’t growing like she should because she is burning too many calories when breathing.
  • She de stat down to 60 while she was sleeping . The nurse came rushing in to check on her because her oxygen wave on the screen was normal. They gave us the rapid response information in case it happens again and we need to call for help and said to call out to the nurses station as well.
  • Plan is to begin a bunch of visits tomorrow from doctors to get a team approach and figure out her breathing situation.
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