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

Hopkins

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!

Saturday, August 26, 2017

Today, We Were Almost Normal!

What an awesome day!  The weather was beautiful with low temps and humidity, which meant Abby could be outside!  We took full advantage of this today!  Her cousins were staying here, so they played in the water table, laid out on the hammock, and played with the fairy houses on the deck.  







Later, some friends came to visit and we sat on the deck and ate had popsicles and played with light sabers.  There was a lot more hammock time too!  They all had a great time running around.



In the late afternoon, we took a rare trip out of the house to our local beach!!  There were only a few families as far as we could see, the weather was gorgeous, and the kids had a great time playing in the sand, collecting shells, and getting their feet wet.  (Getting truly wet is a big no-no for Abby for several reasons, so we just told everyone not to go in any farther than mid-calf.)









After a while, sweet Abs was so tired that she laid on the beach blanket!  She actually went upstairs and crawled into bed early!  I'm pretty sure this was the biggest day she has had in a long time, but she loved every second of it.  The sweet giggles of those little girls is music to my ears, and their special "Best Friends Forever" cheer they made up made my heart melt.  I hope they really will stay this close forever!

Matt and I declared today "normal," which we definitely haven't had in a while.  It's true that most normal people don't do respiratory treatments every 4 hours or hook their kid up to a ventilator, but we are slowly realizing that life can resemble some sort of its previous normalcy.  The difficulty of the last year has made us even more aware of just how precious days like today are.  



Friday, August 18, 2017

Ortho Meeting






We saw Dr. Campbell this morning.  He took one look at Abby and said, "Well, we've gotta get that VEPTR back in!"  We wholeheartedly agreed!  When we asked about the opposing opinion we had before, he noted that in this case, being old equals having more experience in these situations.  He will talk to the other surgeon to let him know the plan.

So what is the plan?  Well first, we have to get this wound healed up.  Nothing surgical can be done until it's closed.  When it is closed, we can schedule surgery.  The good news is that the wound shrunk a centimeter in both length and width in the last week!!!!  This is fantastic news!  

The kyphosis still needs to be dealt with, but the ribs (well, the lungs) are the primary concern right now.  We may still go to Boston for the kyphosis, but we are going to take care of this first.  

He also LOVED her shirt and took a picture of her to use in a slide for a presentation he is doing for the FDA next week!  😍

We are so, so thankful for Dr. Campbell.  He is a wonderful man who will never give up on a kid.  Abby is complicated and this surgery is even more challenging than the others due to scarring, but he said he wouldn't suggest it if he didn't think it would work.  We have hope, and that's the best possible outcome of this meeting!

We are now waiting for a CT so that he can get a little additional information about her lungs.  It won't change his approach, but does give him more information before he goes in.  She will also have a full spine MRI when we come back in September.  Dr. Campbell really likes to have as much information as possible.

Thank you all for your prayers!!  We would ask that you pray that Abby stays healthy and that her wound heals quickly and without further complications.  Then we can get that VEPTR back in as soon as possible.

For those interested: (X-rays below)



The picture on the right is when she got both VEOTRS in.  Note how open her ribs are and how relatively full her lungs are.  (40% lung capacity is awesome compared to what she's getting by on right now!). The picture on the left side is her most recent X-ray.  If you zoom in, you can see that her ribs have collapsed.  The loops were anchors for the VEPTR that stayed in and have drastically moved position.  Her shoulder blade has become tucked under her spine, so he will have to pull that back out as well.  It will be a bigger, more painful surgery, but it will be worth it to help her breathe better.