Life as a Leach

Abby saw Dr. C this morning and he said her incision was fine.  It's not healing quite the way he would like, but it's not infected and they're just going to leave it alone. She'll continue with the antibiotic for 2 weeks as a precaution.  She does heal slowly and agrees with what our pediatrician said yesterday about her maybe having ongoing wound issues.  Therefore, her next veptr attempt will be held off until December 30th to allow her time to heal. If we schedule it earlier and she isn't completely healed, they would delay surgery anyway.  Hopefully, the incision will be totally fine by then (just in time for them to open her up again!)   Not exactly my first choice, but at least she will be home for Christmas.  We will be living it up in the hospital for New year's! :)

12 Days in Africa  is a memoir of a mother's journey with her teenage son to Uganda.  While there, she experienced grief, suffering, and a simplicity that would change her life forever.  From the joy she felt holding a little girl's hand to the anguish of holding a dying boy, Lisa shares it all. While I enjoyed some of the stories shared in this book, I really had a hard time getting past the lack of structure and the many grammatical errors throughout.  I felt like I was reading her personal journal rather than a published book.  Considering this is not a pre-publication copy like others I have received, I was really surprised at the way the book jumped around.  The numerous grammar mistakes were distracting and took away from the overall beauty of the book.

Sarah's Choice  is a book for today's society.  It is a story of a girl who finds herself having to decide between the career of her dreams and a baby she didn't know she wanted.  Sarah has people in her life on both sides of the abortion debate who aren't afraid to share their opinions.  Ultimately, she has to make the choice of whether to have the baby or abort it. I have to admit that I didn't have very high hopes for this book when I chose it.  Rebecca St. James was a singer, not a writer!  I was pleasantly surprised at how well the book was written.  It kept my attention and I loved how she managed to be relevant to the young women of the day while keeping it appropriate and without crude language. I really actually liked it quite a lot! Disclaimer:  I received this book from Book Looks Bloggers in exchange for an honest review.  All opinions are my own.

We are heading back to chop on Friday.  Dr. C wants to check the infection and we will do the post-op appointment then too.  He called in 2 more weeks of the antibiotic to make sure the infection is gone for good.  The good news is that we can cancel our original post-op appointment, and we will get her next surgery date when we see him too!   Just another trip to the city of brotherly love!! :)

1.  These two are so funny together!  They were having a "hoe-down" here. Yes, that's a colander on Sara's head... 2.   The girls have quite enjoyed the dress-up doll quilt Grammy made for Abby!  Little felt dresses and hats stick to the dolls.  So cute! 3.   The boy who wasn't tired after a long weekend fell right asleep on the couch! 4.   A super-sweet former student of mine made Abby a cute little purse.  Abby promptly put all of the checkers pieces in it. :)

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, b...

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 f...

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 ...

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...

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!)

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 las...

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 t...

Wow, what a difference a day makes!  Abby made a whole lot of progress today!  We got her out of bed and standing for a while.  She did well, and wanted to go do a craft in the child life playroom.  She walked there with assistance!  I was amazed at how well she did.  It tired her out quite a bit, but she seemed to enjoy the change in scenery.  The Bevards left this morning and Abby was very sad to se them go.  After a good nap, she was ready for more visitors!  Both sets of grandparents came to see her and she played a little in bed.   Later, I enjoyed a 2 1/2 hour nap, shower, and hot meal at rmh...all in one day!!!  It was glorious.  Matt stayed with Abby and they went to the playroom again.  This time she was taking some steps unsupported and even bent down to pick something up and went on her tiptoes to reach.  From that respect, she is doing really well.  She's very unwilling to move her arms above shoulder...

Today wasn't a whole lot better than yesterday.  Abby is still in a lot of pain whenever she is moved at all.  She's no longer vomiting, so the Zofran is helping.  She's only had 1/2 a pretzel and 4 oz of Apple juice though.  :(.  Basically, she is just lying in the bed with a pained look on her face.  I did get a few traces of a smile today, but she rarely talks and communicates mostly by shaking or nodding her head.  I've caught her crying silently a few times and it breaks my heart.  I wish I could take all of this away!! Abby has developed a fever tonight.  They are pretty sure it's just her body being angry about the surgery, so they gave her Tylenol.  It hasn't worked yet, but hopefully she will cool down soon.  The fever is causing her to breathe very, very fast (80+ breaths per minute!). We have been doing lots of slow breathing practice and blowing bubbles to work on it, but her alarm is pretty much going off nonstop. ...

Abby is pretty sick from the anesthesia and hasn't been able to keep anything down yet.  This was surgery #8 and she has never vomited from anesthesia before, so this is a new and unwelcomed development.  She has been pretty miserable!  For now, she is on a clear liquid diet.   She had lots of visitors yesterday. Caleb, the Bevards, Nina and Paw Paw, and Aunt Judy all came to see her.  Abby was pretty sleepy, but we did get a few half smiles from her.   She went to the picu from the OR, but was sent to the floor because she was doing so well.  There definition of "doing well" is different than mine, but it was good to get on the floor where they don't have to do vitals every hour around the clock.   Until about 2:00 am, Abby alternated between throwing up, desating, and being in pain.  We need her to take deep breaths to keep her oxygen levels up, but doing that hurts.  I sit her up to make it easier, but that makes her throw up.  S...

Abby is out of surgery and in the PICU.  She is resting comfortably, but is on oxygen because she's sleeping so heavily.  She will most likely be weaned off of it as soon as she wakes up.  There are wound drains and pain balls (shooting pain meds right to the site) on both sides.  She's opened her eyes a few times and even sat up, but more out of confusion than anything.  We got her to lay back down and she's back to sleeping hard again. Unfortunately, Dr. C wasn't able to put the VEPTR in.  Abby's ribs are too flimsy and most are more of a ribbon consistency.  Because the right side was so flimsy, he went ahead and opened the left side too--same thing. He did bone grafts for both sides to hopefully strengthen the ribs.  We will try again in 3 months. We knew this was a possibility, but didn't realize how big of a concern it was until this morning when he said he'd been studying her CT scans and just wasn't sure that they would hold the VEPTR....

The nurse came to tell us the surgery began at 9:00.

Abby was successfully intubated.  No other updates.  It will still be a little while before surgery actually starts.

Today is Abby's surgery.  Instead of posting something emotional and worried, I wanted to share a few pictures of her getting a dream come true! Abby wanted to meet Elsa and Anna SOOOOO badly.  We just couldn't justify standing in the rumored 4 or 5 hour lines for one of only two days at Disney World, so we prepared her that it was not going to happen.  She would see them in the parade and yell hi!   Well, God bless the Disability Access Service Card.  It was worth it just for this one moment.  We were able to sign up to see them and just come back at the noted time.  Glorious!!!  We didn't tell the girls until we were in the hallway waiting to go in, just in case it didn't happen.  It just seemed too good to be true!  Their faces were priceless when we told them! Walking into the room to meet Anna and Elsa, Abby just lit up.  It was so sweet, and I will admit getting a little teary-eyed watching her in awe of her fav...

I took Abby back around 7:40.  We have a fantastic team and have every confidence in Dr. Campbell.  It will be a long day.  They are going to let us know when she is successfully intubated.  I will update whenever I heard something.   Keep posting the purple pictures!  Abby loved looking at the ones we got this morning.  Bonus points if you wear a tutu!!  :)

We report at 6:00 tomorrow morning.  Surgery is at 7:30.  We just left Caleb with my parents and are headed back to the hotel to give Abby a bath and use some antiseptic wipes they gave us at the hospital.  After surgery, Abby will be taken directly to the picu rather than recovery. We will be able to see her as soon as they get her in the room.  It won't be until late afternoon. Thank you for all of the prayers and well wishes.  I will post as often as I can tomorrow!

Tomorrow is the big day.  I'm writing this ahead of time because I plan to spend our day making memories and enjoying being a family!  Therefore, the emotions that I'm certain I will be feeling the night before surgery aren't quite there yet...thank goodness. We so appreciate your prayers.  Abby is scheduled for first thing in the morning and we expect the surgery to go well into the afternoon.  I don't expect that we will be able to see her until late afternoon/early evening.  I will be posting updates on Facebook and on here as I can. I do have a blogger app now that makes things a little easier.  Mostly, I am pretty sure I'll be staring into space or pretending to read my book while my mind is racing. We would be honored if you would join us in wearing purple tomorrow to show your support of Abby!  If you have a Joy Runners shirt that we sold as a fundraiser for RMH, that is perfect!  Otherwise, dress yourself in purple and choose joy! ...

Abby had pre-op today and had to be stuck 3 times before they got the blood they needed. We met with the anesthesia team and found out that our awesome anesthesiologist from when she had her MRI will be with her again!  We are thrilled, as he is the only person who has successfully intubated her!   We still haven't gotten into rmh, and we had to move hotels because the hotel we stayed in last night was totally booked tonight.  Ugh!  We found another hotel that isn't so booked up and is close to Target and lots of restaurants, so we will hopefully be able to stay here until we get into rmh.  The kids enjoyed swimming in the indoor pool tonight.  We went next door to target to get Abby a bathing suit, since we didn't expect her to do any swimming.  We went to dinner tonight at Joe's Crab Shack, where I got crabs for probably the only time this season.  They were fabulous! Tonight, please pray that we get into rmh tomorrow!!  I really don't wa...

We had another special dinner Thursday night.  There's a great character dinner with the Cinderella characters at the beautiful Grand Floridian.  It's about as close as we will ever get to staying at a place like that!!! Now, the first character dinner with Mickey didn't go so well.     Abby was less than thrilled with costumed characters coming up to shake her hand.  But princesses are another story!!  We already knew she was fine with meeting princesses, since she'd done great with Anna, Elsa, and Ariel.  And she was thrilled about meeting Cinderella! The princess even dressed up like Cinderella! We got pictures taken outside of the dining room.  All of the photographers are so nice about taking pictures with your camera in addition to doing the professional ones! Abby was beside herself when she saw Cinderella head our way!!  She climbed out of her seat and went around, not even waiting until Cinderella came to her!...