Saturday, September 30, 2017

Hospital Life

Abby continued to need bipap off and on today, in addition to her regular scheduled times.  It seems to be about 3 hours after treatments that she starts needing bipap.  But she was in a pretty good mood and loved her visitors!  Matt and Caleb came this afternoon, and then my mom and dad brought Anna and Lucy this evening.  Abby was excited and surprised!

Now, she's enjoying Descendants 2 on Disney Channel and getting her treatments.  :)

As is typical for the hospital, things don't get done as quickly on the weekends.  Pulm ordered an echocardiogram to check for pulmonary hypertension (always a concern), but only emergency echos are done on the weekend.  They want to talk to CHOP about her thoracic insufficiency, but that can't be done until Monday.

  Pulm did increase her pressure support to the highest setting in hopes that putting more air in her lungs will help.  We will hopefully see a difference tonight. If not, there will be many more serious discussions.  

We would appreciate your prayers that the increased pressure support makes her respiratory rate go down!

Back at Hopkins

Abby came back to Hopkins last night after talking to pulmonology.  Her respiratory rates have been very high again when doing literally nothing.  She was admitted to the floor.  

It was a Rough night. The respiratory rate was 68-70 sustained on bipap, when she is typically in the 20s while sleeping on it.   Heart rate was in 150s.  She was very asleep, but so fast.  When we repositioned her, she woke up and slowed down a little, but then went right back to where she was when she was sleep.  Pulm came in and saw it too.  They called the attending and increased her breathe rate on the vent to 14, but it didn't help. We thought they might send her to the picu.  

10 min off bipap this morning and she is 70 laying in bed, so she is back on and getting a treatment.  Hopefully it will be better after that.  They won't let her eat or drink on bipap so I hope her numbers come down so she can eat breakfast.  

Tuesday, September 26, 2017

Guess what??????

Check out this beautiful, CLOSED WOUND!!!!

We are so very thankful!  God has been faithful through these awful months.  We are thrilled for some happy news and Abby celebrated by taking her first REAL bath in over 9 months.  🎉

I have already contacted orthopedics to see about a tentative VEPTR reinsertion date!  Onward and upward!

Wednesday, September 20, 2017

The Hated Phrase

So, the good news is that Abby came home today!  Discharge actually happened pretty quickly and what we ended up waiting on was the lunch that we had dalready ordered and the respiratory treatments she was due to get at 12.  As soon as they were over, we headed out!  Caleb was surprised and thrilled that we were home (we never tell him unless we are certain because we don't want him to be disappointed if something changes), and the kids happily played together before dinner.  Then they had a puppy visit!

Unfortunately, the bad news is that the doctors don't really know why the very high respiratory rates are happening.  They were able to rule out viruses and high CO2 levels, but they weren't able to pinpoint the cause.  The pulmonologist we saw used the dreaded words, "Progression of Disease."  I seriously almost hear "dun dun DUN!" music each time it is said because it's such an ominous phrase.  It is certainly not something the parent of a medically fragile child ever wants to hear. 

So, they sent her home with the caveat that Abby will most likely need increased bipap support, needs to have a swallow study to make sure she isn't aspirating (scheduled for next week), and will have a sleep study in October (previously scheduled) to tweak her settings because she probably isn't being ventilated enough. 

It's hard to hear that your child is getting worse and there's not a whole lot they can do about it.  We are clinging to Jesus and to the hope that getting the VEPTR put back in will improve her lung functioning.  And every day, that wound is even closer to closing!!

Tuesday, September 19, 2017

Hospital School

Despite having limited resources, Abby and I were able to get quite a bit of school in today!  I got creative and used what I had, including writing on paper towels!  

We did some good work with fractions and discovered that the cabinets in her room can be written on with dry erase markers!  Sweet!  

She also did some online work on the iPad, much to her dismay.  That's not her favorite, but she did finally do it.

Abs' respiratory rate is still pretty high in general, but they have ruled a lot of things out.  Unfortunately, we still don't know what is causing it.  I was able to convince them to let me get her up and moving a bit to see how she did, which was telling.  We will see what they say tomorrow.  

Matt and Caleb came up to visit tonight, which Abby loved.  They both happily played Wii with another boy in the playroom.

  The visits are never long enough, but we are hoping to be able to be home soon. 

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!