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.


Thursday, August 17, 2017

Pulmonary

We had a pulmonary appointment yesterday where our Pulmonologist stressed the need for a plan for Abby from CHOP.  She echoed my frustrations from a medical standpoint.  We are really hoping that tomorrow will give us answers, but we have also gotten an appointment for Boston and are pursuing those plans.  

We keep detailed data about her oxygen levels, respiratory rates, and necessary interventions.  I took it in to our pulm and she was very happy to have it.  After examining the data and the trends, she decided that it is best for Abby to be on bipap twice a day during the day.  She reiterated the big concern for germs and the danger of her catching even a slight cold.  We have decided that Caleb will change his clothes from school as soon as he walks in the door to hopefully keep those school germs out of our house.  

So, as we already knew, no school until there are some big improvements.  Our pulm also helped us to create a plan for Abby flying to Boston, which is a new issue we didn't think we would face.  Changes in altitude and pressure can wreak havoc on kids with respiratory illnesses, but we have a plan to keep her safe.  

Please pray for our appointments tomorrow.  We are hanging out at the hospital tonight and will head to the hospital first thing in the morning.  The bottom line is that we need a plan.

Monday, August 14, 2017

Appointments, School, and Looking Toward the Future

This week is going to be a busy one around here.  Abby has 2 appointments in Baltimore on Wednesday.  She needs her hearing aid mold redone (it squeals constantly!) and she has a pulmonology appointment.  Not too much has changed with her breathing--she is usually still requiring daytime bipap, and sometimes needs it twice during the day.  There doesn't seem to be a rhyme or reason to it, except that it is always in the afternoon.  We have kept the temperature in our house lower in hopes that heat will not be a factor, but the weather has really been pretty mild anyway.  I don't think our pulmonologist will change much at this appointment, since there really haven't been improvements.  I have a feeling we will just "stay the course" with daytime bipap as needed, respiratory treatments and airway clearance 4x a day, and inhaled steroids 2x a day.

On Friday, we have appointments at CHOP with the infectious disease team and our orthopedic team.  This is the long-awaited discussion about what the plan is for Abby.  We are hoping that they will know where they will go from here and be able to give us a timeline of sorts.  They avoided us for 3 admissions, despite us practically begging them to come, and we are pretty sure it's because they really don't know what to do.  So now we have made an outpatient appointment so that they have to see us and gave them 3 weeks to figure it out!

Abby is complicated and we get that.  I know they have exhausted most surgical options.  But we aren't ready to give up and we don't want them to be either!  I've been researching other methods, doctors, and cases like crazy in the past few weeks.  There has to be something we haven't tried.  Matt and I have decided that if we don't leave this meeting on Friday confident that they have a plan and are willing to keep fighting for Abby, we will pursue a different surgeon--most likely in Boston.  It's not ideal because if we travel to Boston half as much as we travel to CHOP, the airfare will be ridiculous.  Not to mention, there are a lot of factors involved in switching to another hospital.  It's not a simple process.  But we will do whatever we need to do to take care of our girl.

So this week, please pray that the surgeons have a plan and are able to discuss with us where they plan to go from here.  This will determine how our pulmonologist proceeds and whether or not we will continue to be seen at CHOP.

Also please pray for Abby and Caleb as the start of school draws near.  Abby is not going to be able to go to school for the foreseeable future, which is heartbreaking for all of us.  I'm not sure that she quite understands what this means, although we talk about it a lot.  She will be getting home/hospital teaching each week, in addition to what I will do with her, but we don't expect that she will actually go to school for quite some time--if at all.  For a girl that is as social as Abby, this is a tough pill to swallow.  Caleb has also had a hard time with realizing that Abby won't be there with him.  That boy sure does love his sister.

The main reason for her not being able to go is that our pulmonologist has said in no uncertain terms that catching anything would be very dangerous for Abby.  Couple that with her need for intermittent daytime bipap and an unstable respiratory situation and it's just not a good idea.  When I asked our pulmonologist about school, she flat out said no.

This will also mean, of course, that we are extremely careful about who comes to our house. Being healthy is an absolute must--if you think you have a sniffle, don't come. Everyone removes shoes at the door and gets hand sanitizer.  Frequent handwashing is a must.  Naturally, no one who has not had the flu shot will be allowed to come to the house this year.  Since our pulmonologist has already said that Abby really can't go anywhere unnecessarily (meaning basically doctors' appointments), we are hopeful that we will be able to keep Abby's exposure to germs to a minimum.  It will certainly make things interesting around the holidays, but at least family members (who are healthy and who have had the flu shot) can come here to visit.

There have been a lot of plot twists since May, and most of them we would not have chosen. But what I am learning more and more each day is that God gives us grace for the moment and He knows Abby's entire story.  Since we can't skip ahead to see how the story ends, we are simply trusting that He will take care of our sweet girl that He loves more than Matt and I ever could.

Thursday, August 10, 2017

Today's Appointment

Here's me being wide awake at midnight because I drank too much caffeine today! 😳. I will pay for this tomorrow.

Abby's appointment went really well today!  Our surgeon was pleased with the progress of the wound using the wet-to-dry dressings, despite the failed skin graft.  Her wound has shrunk nearly a centimeter since surgery.  He really thinks that this method will be best for Abby, even though it is the longest and slowest of the options.  The curvature of Abby's spine fights everything else he has tried, so this is now our best chance.  It is going to take a while, but it will eventually close.  

I can't say enough about our surgeon.  He has been SO diligent and truly cares about Abby. He knows this has been a long road and he is not willing to put Abby through more surgeries without positive outcomes.  His goal is to keep her out of the hospital for a while, and we are hoping that too!  He really is a great guy!

So, my theory was proven correct yet again: when we pack to be admitted, we get to go home.  It's when we least expect to stay that it happens!  

My dad drove us today and we are so grateful!  I had to do 2 sets of Abby's treatments and a dose of meds in the car, so it is so very helpful if someone else drives!  Plus, I got to spend some quality time with my dad! 😍. Love that guy!

Tonight, we celebrated a good appointment and took advantage of the low heat and humidity with a walk on the boardwalk.  It has been cool enough in the evenings for Abby to be safely outside, so we all felt like we were breaking out of jail for a few hours!  We hid and found some Kindness Rocks and got some ice cream.  It was a wonderfully normal night!


This guy thinks that boat is his!  He inspired me to paint this rock tonight.



Sunday, August 6, 2017

Discouraged

Well, I've been reluctant to say this, but it's official now...Abby's skin graft failed.  We pretty much knew it had just a day or two after getting home, but it fell off completely last night, leaving us with no hope.  She has an appointment on Wednesday at CHOP, so I guess we will see what the next steps are then.

We were so hopeful that this would work, so it's a big let down.  We really aren't sure what we will do from here.  We are continuing with bandage changes 3x a day until we see him on Wednesday, but I'm guessing we will eventually try another graft.

Abby is also needing bipap much more these days.  Most days, we have to put her on twice a day.  She is still happy and playing, but she is starting to recognize much more than she is having trouble breathing.  Several times, she has asked me to check her breathing because she can't catch her breath.  I'm glad she's becoming more aware of her body, but I wish she weren't needing the bipap so much.

Nevertheless, we have had some fun.  It's been so nice outside that we have been able to spend some time on the deck in the evenings.  The other night, we played games outside while Chloe sunbathed in the grass.  :)





My mom gave Abby anew set of American Girl pajamas with a matching set for her doll.  They are so cute!  It's hard to find button-down shirtsleeved pajamas!


We are hanging in there. It hasn't been easy.  Abby still has so much spunk in her that it's hard to believe how much she has been struggling.