Monday, September 18, 2017


I brought Abby to the Hopkins ER this evening at the request of her pulmonologist.  I called her this morning to fill her in on the weekend and to tell her it was continuing.  Then, I let her know that even on bipap, her respiratory rate is still very high, which was new to us.  Usually, bipap does the trick.   She told us to come here, so here we are.  Hopkins has great expedited ER time when the doctor calls ahead for you, so we went almost immediately to a room, and then she got a chest X-ray shortly after.  

The X-ray showed that the Right lung is diminished, which isn't surprising.  "Noticeable deformity of spine and ribs."  Oh my gosh!  Seriously?  We had no idea! 🤣. That one made me chuckle.  I really hope the radiologist didn't think that was new information for us!

An IV was finally put in on the 3rd try and her blood gas (CO2 level) was good, so that was reassuring.  But her respiratory rates and heart rate are still very high (RR is 66 on bipap and HR is 142 asleep as we speak.). The decision they are making is PICU versus floor, so I'm not sure how long it will be.  "Soon" is a relative term in the hospital.

Sunday, September 17, 2017

Plugging Along

Our CHOP appointments last week were productive.  Her plastic surgeon was thrilled with the progress of her wound.  It should be closed by the end of the month!  We will see him in mid-October and if everything goes well, Abby will be cleared to proceed with the VEPTR reinsertion!!

We had some fun at the aquarium after her appointment.  Abby really loved being out and it was the perfect scenario--the place was empty!!

She had her MRI the next day and recovered well from that.  We came home Thursday night to a very happy boy and dog!

This weekend has been kind of rough, sadly.  Abby's respiratory rates have been very high and her saturation levels have been low...we want them the other way around!  She's been on her bipap a lot this weekend and we have had to stay inside.  Even then, her respiratory rates have been in the 70s.  She has been SO out of breath and has been really frustrated with herself. She is literally gasping for breath while lying on the couch.  She's fine on the bipap, which is why we didn't take her in, but it's still a little concerning. I'm calling our pulmonologist tomorrow to see what she thinks.

Tuesday, September 12, 2017

Simple Joys

Abby loves to water the flowers with her watering can!

We visited the puppies one last time before they go to their new homes.  She is going to miss these dogs!  They have been a bright spot in her summer.

Abs hasn't taken a "real" bath since December because of her open wound.  Just think about that for a second....sponge baths and hair washing that takes 2 people for 9 months. Lying down on a bath bench to wash your hair to avoid getting the wound wet for 9 months.  (Well, actually, she had 4 months in the halo when she couldn't bathe or wash her hair at all!!!) Crazy.  This girl LOVES her bath and has so missed playing.  She asked if we could put a little water in the tub tonight so she could walk around in it.  She had the BEST time stomping, sitting on her bath bench kicking her feet, and playing.  💜

Tomorrow morning we head to CHOP for a few days.  Abby has an appointment tomorrow with plastics.  We know he is going to be excited about her wound!!

I'm so thrilled we are almost there!! (Remember, all of the pinkish skin was open at one point!)

On Thursday, Abby will have a dynamic MRI of her full spine.  This will give us good information about her curvature and the degree of her kyphosis (which we know has gotten worse since hardware removal.) We will also learn more about her lung volumes and what her chest walk really looks like these days.  It will be excellent info for Dr. C to have in preparation for the rod reinsertion.  

The MRI will take about 4 hours, so she will be under general anesthesia.  We are hopeful that she will wake up fine without any additional breathing issues, but we are in I chartered territory these days!  The anesthesia team is booking her a room just in case, and we are praying we won't need to stay.  But we have learned to pack as if we are!