Thursday, August 21, 2014

Thankful Thursday

I've been really slow to write this because I wanted to make sure I could do it justice.  I didn't want to write a cursory post in the hospital when I knew I couldn't devote the time to it that I wanted.

When I woke up on the morning of August 3rd, I felt so alone and anxious.  We were leaving that afternoon to begin our VEPTR journey with our little girl, and we really had no idea what was going to happen.  I was beaten down and just plain sad.

Little did I know what had been in the works for months.  My amazing sister had planned a HUGE send-off for us that involved lots of lies and avoidances of truth along the way!  Matt staged that he had to go pick up his laptop from the church (he knew just a tiny bit--enough to get us to the church).  When we made the turn onto the road the church was on and I looked up into the parking lot...I saw cars.

TONS of cars.

And a huge line of people dressed in purple.

Some were in tutus.

Everybody had signs, balloons, and noise makers.

250+ people were there for us.

Did I mention it was a sea of purple?!?!






I was in absolute shock.  All of these people were here because they love and care about our family.  We had family members, people from our church, CCPS staff members, friends, people from the community we didn't even know...it was incredible.  What an outpouring of love.  I didn't even know what to say.

When we drove around and got out of the car, I hugged my sister and stood there in awe for a few minutes!





Bruce made a sweet little speech using the speaker on his police car.  Then Pastor Wagner had everyone join hands and pray, which was pretty amazing to see in itself.





We spent the next hour or so greeting everyone and thanking them for coming.  I tried so hard to get to everyone, but as I went through the pictures I realized that I missed some people!  So I'm sorry if I didn't get to thank you personally!!

Now it's time for the photo dump.  I know this isn't everyone, but I tried to include lots of pictures so that you could get an idea of how amazing this all was!!

(I didn't include names to protect the people pictured, just in case some weren't crazy about having that info on the internet!) :)

My sweet friend with her little heart warrior (he has on a custom made I <3 abby="" and="" her="" of="" p="" shirt="" some="" students="">

One of Caleb's best friends and his family (his best friend's mom is now his teacher!


Men in tutus...love it!!


Amy and Owen


My mom and sister managed to keep this a secret for a very long time!


Caleb's other best friend!


Love the support for my Caleb Boy.  He sure is the best big brother ever!!


Abby's awesome pediatrician came!  He is an incredible man and doctor.


Janet was instrumental in helping my sister make signs and get accessories for everyone to wear.  What a sweet woman!


Some of my family!


Our best friends were away, but they made a special sign just for us!

This sweet lady has been SUCH an encouragement to me over the last four years.  She gets it in a way that most can't, and I love her so much!  I love her wonderful daughter too!!


Awesome family!!


My cousin and her family (the baby is in the carrier sleeping!)


This hysterical family had me laughing so much!  Their mom was making a tutu for herself and then her boys wanted to wear them!  She said this is the closest to having a girl!


Several work friends came to show their support!


Another wonderful work friend and her family!


Wonderful, supportive family!


Great family--the mom worked with my mom and the family joined us for the Shuffle last year!


Sweet church family!


Caleb's wonderful kindergarten teacher and her daughter


Another family of Abby Cheerleaders from our church


Abby's awesome speech therapist and her family (I don't know what I will do when Abby has to transition to school-based therapy!  This woman has taught me so much, given me so many hugs, and endured so many questions!! She is a saint!!)  


Great church family (I had the sweet little girl in VBS this year!)


Oh, Owen!  


From the bottom of my heart...thank you to EVERYONE who came to our send-off.  It was such an overwhelming and emotional event.  We are SO grateful for your love and support!  And to that amazing big sister of mine...I love you.  You are incredible.  Thank you for all of the time and effort you put into this.  There's no thanks big enough to show how much this meant to us.

God reminded me in HUGE way on August 3rd that we are most certainly NOT alone in all of this!











Wednesday, August 20, 2014

Vacation of Desperation?

We took a little jaunt to Philadelphia yesterday, jokingly saying that we were pretty desperate to get a vacation.  I can assure you, this was no vacation!

Monday evening, we noticed that Abby's incisions were oozing a bit and the drainage was enough that it was seeping through her shirt.  Everything was pretty red and goopy, so I followed the nurse practitioner's advice and took pictures.  I called first thing in the morning on Tuesday and emailed them the pictures.  I got a very quick call back saying that we needed to bring her in...to CHOP...4 hours away.  I begged and pleaded with them to let us go to Hopkins (you know, that world renowned hospital a mere two hours away?!), but they insisted that we go to the CHOP ER with the expectation to be admitted for a few days.  Yay.

So, I called Matt (who had already left for work) and told him to turn around.  We hurriedly packed some stuff in the suitcase and called my mom to make some arrangements for Caleb.  I had just put him on the bus for his first day of school and now we wouldn't be there when he got home.  Sigh.  Between my mom and my sister, they expertly took care of everything with Chloe and Caleb.  <3 p="" them="">
At Hopkins, when we have been told to go through the ER for respiratory issues, the ER is expecting us and a pulmonologist is alerted upon our arrival.  We are seen pretty immediately by people who specialize in the reason we were there.

Not the case here, and I was kind of laughed at for thinking that would be how it worked.  Nope.  We saw three nurses, an ER resident, and the ER attending before we ever saw an orthopedics resident.  And nobody in the ER had ever heard of VEPTRs or had even met Dr. Campbell.

Now you know my thoughts on residents.  I'm not a fan.  But I did like this orthopedics resident more than most because he didn't make any decisions without talking to Dr. Campbell.  Dr. C couldn't see us because he was in the OR, but at least he was consulted.

After much deliberation, it was finally decided to start Abby on some antibiotics and change some of the steristrips.  Yep, that's it.  That was all they did after we trekked four hours and abandoned our son on his first day of school.  This could have easily been done at Hopkins (or at the pediatrician's office, for that matter!), so we were a bit frustrated.  Now we know.  I think we'll be going to our pediatrician before we even bother calling CHOP.  For whatever reason, they are anti-Hopkins and want every little thing done there...xrays, bloodwork, pre-op...everything!

All of this in the ER took quite a long time and we'd already made hotel arrangements because we were expecting to be admitted.  The cancelation deadline for the hotel had passed by the time we were discharged, so we figured we might at as well stay if we had to pay anyway.  And, it was rather late and Matt wasn't all about driving 8 hours in one day with a 4 hour ER visit in between.

We left this morning and got home around 2:30 after picking Chloe up.  Caleb was very happy to see us and everyone is happy to be home!  Abby's back is looking a little better with 4 doses of antibiotics in her and she was thrilled to take a bath in the tub instead of having the lie down on the counter.  (I used this clear plastic covering from the hospital to cover up the wound and didn't fill the tub at all, but she was a much happier little girl!)

The things we do to get a vacation around here!  :)

Friday, August 15, 2014

So Sorry for the Delay!!

We ARE home!  We got home late Tuesday night after a five hour battle with multiple supply companies because our supply company gave us an oxygen tank with a broken regulator.  We were seriously afraid we wouldn't be able to come home that night because of it, but CHOP came through for us!

Since we walked in the door, I have been in high gear.  I spent Wednesday trying to rediscover our living room floor, learn how to use our new oxygen equipment, and try to keep a very cranky little patient happy.  On Thursday, I jumped back into work with two feet while my mom stayed with the kids.  I came home before nap time so that she wouldn't have to worry about the oxygen stuff. Today was a repeat of yesterday, except that I got to eat some yummy crabs while Mom took care of the kids (that's hard to do with crab goo all over you!).  AND, Abby was able to break out of the house-jail for a few hours and go to the farmer's market.  She rode in the stroller most of the time and was really tired by the time she left, but she enjoyed petting the dogs and seeing some friends.  I think she liked wearing real clothes for the first time too. :)

At this point, Abby's pain is minimal and she hasn't been taking pain meds very often at all.  Her biggest issue is the eating right now.  She refuses to eat much of anything at all and throws up just about everything we do manage to get into her.  Today was better--she ate small amounts of yogurt and didn't throw anything up!  This is progress.  Let's just pray she continues to improve and eat more, because she really can't lose weight!

Thank you for all of your prayers!  I have LOADS to blog about and lots of thank yous to give as well, but I wanted to at least give a quick update.  :)


Monday, August 11, 2014

When will we go home?

There's been some discussion about when we will go home.  From an orthopedic and post-op standpoint, Abby is looking really good and we could go home today.  What is hanging us up is her oxygen dependency.  She is now pretty good off of oxygen while awake, but still needs it while sleeping.  We tried keeping her off while she napped, but needed to put her on after a little while.  They don't feel comfortable sending her home on oxygen if she didn't have an oxygen requirement in the past.  We agree.  While we are certainly capable of handling oxygen (this is nothing compared to a vent!), we really would like for her to be back to baseline.  

Regardless, we will be getting an oxygen concentrator delivered to the house so that we will have oxygen for her as needed.  We keep a few small cans in case of emergency, but that wouldn't last us through one night!  She will also go back to continuous monitoring using a pulse oximeter while sleeping and spot checks throughout the day.  Hopefully, this will all be temporary!

So....we will be here for at least one more day, or until she can sleep through the night without oxygen. Please pray that this happens!  I'm not rushing to get home because I really want her back to baseline and safe, but I know the longer she is on oxygen, the harder it is to get her off.

Silver shirt


The silver T shirt that Abby has been in for all of the pictures is actually given to us by the orthopedic department.  Silver has anti microbial and pain relieving properties and these shirts are used for all veptr and spinal fusion kids.  It's also a compression shirt, so it provides some cushion and comfort that way.  While it is difficult to get on and off because it's so tight, she is very comfortable in it!  Good thing, because she is required to wear it!  She could put something on top of it if she wanted, but she is very comfortable in it and doesn't want to have anything else.  

I'm not sure how long she will need to wear it, but I do know that she will have it for each veptr surgery and many kids still wear them at home.  We will have quite a collection over the years!  

(This is an old picture taking right after surgery!  She looks much better now!)

Sunday, August 10, 2014

Post-op day 5

Today was a really good day!  Abby had the best night's sleep so far, and enjoyed lots of time coloring, visiting the atrium on the main floor, and playing in the playroom.  We even took a little walk outside!  She was able to sprint off of the oxygen for several hours today, but wore herself out and needed it again this evening. Perhaps it was the jumping on the bed that did her in...wish I was joking!  The girl is a maniac!  

We have had our favorite nurse for the third day in a row, and that makes things so easy and pleasant too.  She is so sweet and genuinely interested in Abby.  She's definitely a peds nurse!  I appreciate that she recognizes how well we know Abby and takes her cue from us.  

Abby also ate much better today and even drank 8 oz of pediasure!!  This made me so happy!  Her iv blew tonight, but because of her great fluid intake today, they didn't have to put another one back in.  We are hoping that was the last iv she will need during this stay.  If anything, she is enjoying the freedom for a little while!  

Thank you for continuing to pray for us.  We feel so loved and supported by our friends and family!  Group hug!!  :)

Saturday, August 9, 2014

Post-op day 4

Abby's days are getting better, and she is enjoying the playroom.  We even were able to take her off of the floor for a little while for a change in scenery.  

Last night was really rough.  Neither of us got much sleep at all.  They transitioned her to all oral meds and the oxy just isn't working as well as the morphine.  The nurse finally gave her a rescue dose of iv morphine to get her through the pain.  They were able to up her Valium to hopefully fill in those gaps, so I am hoping tonight is better. It's not too much of a problem during the day, but nighttime is hard because the back muscles get stiff and start to spasm.  

Bright and early this morning, Joe Resident sauntered in and announced that we would be going home today!  Uhhhh....she's on oxygen, her pain isn't managed, and Dr. c said he would see us Monday!  Nope! Our nurse was so annoyed with him!

The big issue is that Abby has become pretty oxygen-dependent.  I can't even take it off for a minute without her desating, as I learned when I unhooked her to put her on the potty and she went from 96 to 78 in 30 seconds.  Our day nurse thought she needed a chest X-ray and I agreed.  After all, she wasn't oxygen-dependent when we came here and now she needs a liter to even stay above 90!  Even with a liter, she sometimes dips.  There was also a little incident that happened during surgery where the lung got knicked, and I wanted to make sure that wasn't the cause of the problem.  

The same Joe Resident from this morning said she just needs to take deeper breaths.  Try telling that to a 3 year old when every breath hurts!  I said I wanted one anyway, so we just got back.  I don't know if we will get results tonight.  

Please pray for her breathing, as well as that Abby starts eating and drinking well. It has been a very slow process.  So far, no one has mentioned a feeding tube.  Let's hope we get her going soon before they do!

Sorry these aren't more entertaining.  I'm on the iPad and typing is hard to do.  Plus, I'm downright exhausted!  A basic update is about all I can do. Bare with me!