Life as a Leach

Abby had a better day today!  Her emotions were under control and there weren't nearly as many tears today!  She worked super hard today and pushed through the pain.  She did great with pt and even climbed a flight of stairs like a rock star!!  I was shocked at how well she did.  The PT actually signed off on her (not that she's fine, but that she is safe and we are trained to take care of her at home.   We still aren't sure when we will go home.  That's up to Dr. C., who is still in charge even when he is away.  Love that about him!! We did a few crafts today to pass the time and keep her sitting up in her chair.  This was one of them! Lots of things were better today! * Abby climbed the stairs and was cleared from pt. * Her attitude was much more positive today!  The pain is excruciating and she was definitely hurting, but her attitude about working hard was much better. * Certain post-op tummy issues were causing problems.  That ...

So much for no puking.  Out of the blue with no warning, Abby got sick tonight after being asleep for over an hour.  She was on her side and puked all over her picc line.   Not good.   So in addition to washing her up, cleaning her hair, changing her clothes, and remaking the bed, (all while standing and being in pain!) the poor girl had to have her picc line dressing changed (with lots of tape removal) at 11:30 pm.  No fun. If you read my last post, you know she was already teetering.  This just pushed her over the edge.  I held her after the nurses left and just let her cry.  Thankfully, she's asleep again now (still needing oxygen) and hopefully the rest of the night will be calmer.

 After a good night's sleep at RMH, Caleb and I walked back to the hospital to find that Abby had already had walked down to the playroom with pt!  Then ot came to  work on some functional skills like getting dressed.   Caleb and Matt went to the Philadelphia Zoo today.  They had a great time, but I wish we all could have been there.    They brought Abby back a baby for Mia (her beloved red panda)!  She is in love!  The baby's name is Maya. We did some painting with water colors today.  Abby painted a tree.  This is the final product. This evening after they left and we ate dinner, I encouraged Abby to take another walk with me.  She is supposed to walk at least twice a day.  She pitched a humongous fit and screamed at me all down the hallway so loudly that the nurses came out to see what the ruckus was about!  I tried many times to explain why we needed to walk, but it didn't matter.  When we finally made it to ...

Since my sweet boy is in town, Matt stayed with Abby today so that we could hang out together.  We went to see Angry Birds at a local theater we walked to.   It was cute, but not 3D worthy (we saw it in 3D because the time of that showing worked best for us).   Now we are back to RMH for the night so that I can hopefully get a good night's sleep!   This morning, in typical Abby fashion, she not only walked, but walked the complete length of the hallway!  She needs lots of support, but she is doing it!! What a determined little girl.   What is better about today: * The drains and pain catheter came out, so she doesn't have anything tying her down! * She is starting to improve her mobility.  It's still pretty limited, but she is getting there! * she is continuing to eat like a champ! * Because she isn't tied down now, we can go off the floor for short amounts of time. Prayer Requests: * continued pain management * increased mobility

As you read in my quick post, Abby was cleared for pt.  We haven't heard Dr. Campbell's official word about the sturdiness of the unique anchor he created, but at least she can start moving.   The pt came at 11 and got Abby out of bed.  She sat on the edge of the bed, stood holding on to the bed, and sat in her wheelchair.  OT came later and did some similar work with her.  She will get daily OT and PT for as long as she is here, but we will also work with her.  She is in a ton of pain from any kind of movement--ANY.  Standing hurts a lot in her hips, so she could only do it with a lot of support for about a minute.  She is also having trouble sitting up straight and holding her head up.  The left side seems to hurt more, so she is leaning on her right side.  We are trying to get her to sit up straighter, but it's hard for her. Walking or lifting her legs higher than 3 inches off the ground is a no-go for now. It just isn't happening. ...

We are cleared!  Praise God!  They said the CT looks ok.  Pt is coming in a few minutes and ortho is changing the dressings now because she has a lot of drainage (enough to soak her bed).  We premedicated her in hopes to minimize pain. Thank you for praying!!  

 Abby is settled into the PICU and sleeping pretty fitfully, which is to be expected.  She wakes up about every 10 minutes in need of another push of her PCA pump!  They don't have her on continuous meds right now because she was drugged up more than usual in the OR, so we will see how it goes.  The Fellow has been great about deferring to me and asking lots of questions about her history.  She is currently on oxygen and has a trumpet in her nose to clear her airway (her tongue still flops back and obstructs it at times), which she hates!  The only sentence she has said is, "There's something in my nose!!"  The plan is to keep it in until she wakes up more.  If she needs more support than that, she will go on Cpap.  We have done that before, so it's no big deal in the grand scheme of things! The poor girl about lost it when they rolled her to look at her back.  :(. It's safe to say that she is pretty majorly hurting! She's a bit famous i...

Long post warning!!  This recovery has been so weird.  In many ways, she has done great!  She hasn't had any of the pulmonary issues she usually struggles with, and that's awesome!   But some concerns have kept her from being cleared for PT, so we can't do anything with her.  Except for going on the bedside potty, she isn't allowed to move.  We haven't even been able to work on sitting up--she is unable to hold herself upright while laying in bed.  She needs to be supported by a blanket roll at this point.  Her legs continue to cause severe pain from the hip down the thigh, and I found out why:  Dr. Campbell takes muscle from the hip to support the VEPTR.  We were told her range of motion in her legs will be pretty drastically affected, but that she can gain it back with lots of work.   A CT was supposed to be done this morning to examine the area of concern, but additional dialogue needed to happen with Dr. Campbell to find out wha...

Abby had a good day today.  She had some good awake times and didn't require a ton of pain button doses.  She made a lot of great strides by getting her arterial line, Foley catheter, peripheral iv, and nasal trumpet removed. This evening, she was able to transfer from her bed to the potty beside her bed, which was a huge accomplishment!!  She did really well.   Tomorrow morning, she will get a CT done to check on a few things before she is cleared for pt.  Then the hard work will begin!   Prayer requests: * Abby's hips seem to really be hurting from the veptr being attached at the pelvis.  Every little movement seems to really hurt, so I think walking will be a very slow process.  * Please pray for secure veptr placement.  Abby's "unique" anatomy made this a little challenging. * We would both love to have a good, quiet night's sleep tonight!  If all goes well, she should move to the floor tomorrow--and hopefully to a single room! Thank...

Abby actually did really well overnight.  She is only on 1/2 liter of oxygen and still has the trumpet in her nose to keep her from obstructing her airway, but they think that can come out today.  We just rolled her to her side for the first time, which she hated!  She has settled down now though.  We have a great nurse who made a little pillow for her legs and gave her an ice pack the length of her back, so that seemed to help.  She is talking a bit more and even informed me that she was going to beat all of us at Uno again. :) Unfortunately, we are in a double room and we got the tiny part (1/3 of the room!). Our space is really limited!  I have the old-style chair bed instead of the much comfier couch, but it wasn't bad with the egg crate.  I didn't sleep much anyway! Abby's roommate has been in the PICU for a long time, and she has a father who is a piece of work.  He spent the evening yelling at the baseball game on tv instead  of paying...

We are waiting to see Abby in the PICU, but saw Dr. Campbell and she did well. It's a whole lot of metal in a little body.  Here's her surgical X-ray.  We are on the other side of surgery, so now the hard part begins!  Thanks for praying us through this long day!  I will try to post again late tonight, but my girl is going to have my undivided attention. :)

They are starting to close her up!  It will still be a while though.  Everything went well. She will be going to the PICU, but Dr. C will come out and talk to us fairly soon.

Dr. Campbell IS able to do both sides (this is a huge praise because it means she won't have to have a second big surgery!).  He has finished one side and is moving to the other now, so the surgery is about halfway done. In other news, my headphones don't go up loud enough for all of the noise in the waiting room today.  People are in rare form and seem to have no problem having very personal phone conversations in a public location!  Sigh...

We just got an update that Dr. Campbell is just about to start.  Prepping takes a while for a complicated surgery like this.  

Abby went back at 12:20.  I was able to hold her hand and sing truth to her until she fell asleep.  She requested "God of Angel Armies" and "In Need of Grace," so the last thing she heard before falling asleep was the promise that God will be right by her side.  I can't think of a better way to start surgery! She is booked for 6 hours, so we are in for a long day.  We will update as we hear something. Thank you for your love and prayers!

The hospital surgical waiting room is an interesting place.  It's the place where parents go to sit, wait, worry, pace, and cry as their children are being operated on.  This is my 18th time doing this.  I've been in three different waiting rooms at three different hospitals, but they are all basically the same. We are all together in the same room, waiting for our child to go to recovery.  The surgery could be something as simple as ear tubes, something quick but worrisome like a biopsy, or something very serious like a brain tumor.  But no matter what the reason people have come into the waiting room, we are all concerned about our children on that operating table.  In that, we are all the same. As I look around right now, I notice the furrowed brow of the mom trying to hold it together as she worries about her child.  I hear the laughter of the large group in the corner who have gathered to distract the family and try to...

Surgery won't be for a few more hours.  An orderly took us down, only to realize that he got the wrong patient. Dr. Campbell's surgery (on a veptr kid) is taking longer than they thought.  Please pray for that family and that the complications aren't major.  Veptr families have a special bond! Abby is quite happy to continue playing in the playroom!  I'll send an update when we are in pre-op.

Today's picc line placement went off without a hitch, and we spent the rest of the afternoon and evening in the playroom, visiting the atrium, and playing Uno.   Reality set in tonight before bed and Abby shed a few tears, but she is ok.  We talked about how bravery doesn't mean she isn't scared.  Here's hoping she sleeps through the night before the big day tomorrow!  She has loved the purple preview pictures that were posted today!  I know she will be thrilled to see everyone's #purpleforabby pictures as she recovers. Thanks for all of the prayers and encouragement!  We feel so loved and know that God will be right there with us, just as He has every step of the way!

We've got our purple picked out!!  How about you??  Are you ready to go #purpleforabby on Tuesday??     For those of you who are newer around here, every surgery day lots of our family, friends, and even people we don't know personally wear purple in support for Abby and take selfies to post on Facebook.  Purple is her favorite color, and she absolutely LOVES seeing pictures of people dressed up in purple to show their love to her.  Her favorites are the animals wearing purple!  Those often bring the first smiles we see post-op!  We will seriously look at all of the pictures multiple times while in the hospital.  The more creative, the better!  They seriously bring her SO much joy, which is what it's all about when you go through what she has to endure.   If you post a selfie, be sure to hashtag it #purpleforabby so that it is easy for us to find it later.  That way, all I have to do is search that hashta...

My tiny dancer and her cousin Lucy had their "dance recital" on Mother's Day!  Since Abby will be in the hospital for her studio's dance recital, we let them put on their own little show for us.  I can't post videos to Blogger for whatever reason, but the dance video is on my Facebook page.  Here are some pictures of the cuties!  

I've kind of been in denial about this next surgery, and I'm not sure why. I know she needs it and for the most part, I know what to expect.  But I've been putting off pretty much anything related to surgery.  If I ignore it, it will go away, right? Wrong.  Which is why I resignedly began packing yesterday.  You may think that is early, considering we don't leave until Saturday, but a lot is involved whenever we go anywhere.  I have to update and print multiple copes of her health history, gather medical equipment and supplies, hunt down specific clothing that she is able to put on easily post-op, collect toys and activities for her to do, get Caleb packed and organized...so there's a lot.  Plus, we are pretty busy the next few days and yesterday was when I had the time to get a good start on it. To quickly summarize this surgery: *  We leave Saturday and will attend a Thoracic Insufficiency Syndrome family day on Sunday. *  S...

I took advantage of the Mother's Day "You must be nice to me today!" card and got some pictures with the kids after church.  Lucky for me, both of my kids actually like dressing up!

After 9 long, frustrating months of waiting, Abby finally received her custom-made wheelchair!  She has an E Fix system, which is a convertible that allows her to drive it herself using a battery, or have us push her manually--all at the turn of a dial!  She named it Purple Lightning! :) There's a bit of a learning curve as she figures out how to drive her new wheels. Idiot realize how hard it would be because she great at the clinic, so We took Purple Lightning on its maiden voyage to Walmart.  Well, that was a hysterical disaster that involved lots of fallen merchandise, nipped ankles, people getting cut off, and a million apologies for our rookie driver! We all took a walk on the boardwalk yesterday to get more practice in.  She practiced on a lot of different terrains and we gave her lots of pointers!  She is definitely improving! We have known for a long time that Abby would need a wheelchair.  She tires easily, has constant back pain, and gets winded ...

I saw this on Facebook and thought it was pretty appropriate for Mothers' Day! 19 years ago, Scott, all 5 kids and I took a trip to Omaha. Kenny was 10, Todd was 8 , Kevin 5, Ryan 2, and Lisa was 6 months old. We took a day and went over to visit Scott's Aunt and Uncle who lived in Omaha, in their beautiful new home. When we pulled up, the exterior said to me, "This is what dreams are made of." As his aunt gave us a tour of their home, I just remember thinking how amazing it would be to have such a beautiful home, full of rooms and bathrooms and a huge kitchen that screamed to be full of family and fun, but what stuck out the most in my mind and sparked a completely different envy than just the size of the house, was the vacuum lines that remained in the carpet in the formal dining room.  As we strolled into the dining room, I remember thinking to myself, "oh my gosh! Her vacuum lines are still in her carpet probably a week or more after she vacuumed!! Wha...

We took advantage of our Family Passport we received from Make a Wish and visited Kings Dominion a few weeks ago.  It was a fantastic family day!  We were pleasantly surprised at how much Abby could ride, and Caleb enjoyed quite a few "real" roller coasters!

Happy Teacher Appreciation Day! We are so thankful to have had fantastic teacher for our kids!  We are so thankful that they teach the whole  child, not just a subject.  Both kids have teachers who truly encourage them to love to learn, and we are so grateful! To our kids' teachers:  thanks for lighting that fire!  You are awesome!

As we are all in the middle of PARCC testing season, here's something important to remember...