Life as a Leach

As you can imagine, COVID 19 has caused us quite a bit of stress!  We are doing everything we possibly can to keep Abby safe, including working from home and not going anywhere.  We used Instacart to grocery shop and wiped everything with disinfectant wipes on the porch before bringing anything inside.  We also wore gloves!  There are many unknowns right now regarding Abby's surgeries.  Her orthopedic team canceled all of the pre-op appointments we were supposed to have next week and in April because all outpatient appointments are being postponed for the time being.  This means we will not be meeting with ortho, infectious disease, plastic surgery, pulmonary, and ENT right now.  All elective surgeries in New York have been canceled for the time being, but it is unclear as to when that order will end.  Right now, the orthopedic team still has Abby on the schedule for her surgery and subsequent inpatient stay in May.  It would take a mirac...

This is my new shirt and it has never been more true.  The last few days have been filled with phone calls, paper work, scanning documents, and faxes.  We have prayed about our decision, talked to Abby's pulmonologist, weighed the options, and cried.  There's no great answer, and our pulmonologist recognized that.  She was quick to acknowledge that we have had to make hard decisions for Abby before and we have always made the right one.  She did echo a lot of our concerns and validated our feelings on the options, which helped us to make a decision. 1.  We are going to meet with Dr. Lenke at Columbia University Hospital in New York City.  There was a 14 page application (yes, I said application ) and I had to request all of Abby's medical history related to her spine, as well as her most recent CTs, MRIs, and Xrays be sent to them.  Once all of that is received and reviewed by Dr. Lenke's team, they will decide whether or not they will accept...

We enjoyed our day today as we celebrated Christmas, even though we were sad to be away from family.  Thanks to FaceTime, we were able to spend time together anyway!     Matt and Caleb come over early this morning with the gifts that Santa brought to RMH. The kids were so excited about their gifts!  We only brought a few of the gifts from us here because of space concerns, but that just means Christmas will last that much longer! Caleb's favorite gift from Santa was a Lego Mars set that shoots alien pods out through tubes.   He also got several other Lego sets, the complete set of Harry Potter movies, and the new Fantastic Beasts book.     Abby's favorite gift from Santa was a bike for her American Girl dolls.  It was all she talked about and Santa did not disappoint!  She also got several Lego sets, a dancing ballerina Barbie, and a book that is all about American Girl dolls.  We let her pick a few small things to keep here in her room ...

Today has been rather taxing and I'm tired, so my post will be short.  Abby was pretty down all day and not very pleasant...even when my sister made a surprise visit with the kids and Caleb!  Although she didn't seem to be having much fun, she cried when they left and told everyone all about their visit.  I guess she enjoyed herself and had a funny way of showing it.   Here are a few pictures of their visit: They brought her this shirt!  #perfect Amy, thank you for being crazy enough to drive 5 kids 4 hours each way to visit a grumpy little girl!  I promise you, we both really appreciated it!!  Love you!

After thinking we would be staying in the PICU another night, we moved to the surgical floor around midnight.  We have our own room!  We really love this floor and all of the familiar faces.  One of our previous nurses saw us and said she was going to wear purple scrubs tonight just for Abby! We saw Dr. Cahill this morning.  He was expecting that Abby would have started walking by now. He is thinking Abby will go to rehab, but it's pt's call. She still is buckling when she tries to stand with support, so I'm anxious to hear what they think. Abby was a bit restless last night.  Her heart rate and respiratory rates were high.  After moving leads and repositioning, we gave her dilaudid because I thought maybe she was hurting.  It helped.  I think I am just going to just request scheduled dilaudid today so that she is ready for pt.  I don't want her to be miserable, and it's harder to time things without the pain pump.  She is definitely in ...

Abby had a good day!  Her oxygen has been fantastic and he pain is under control when she isn't moving.  From a medical standpoint, she is doing great!   Physically, things are tough.  She has only gotten out of bed to transfer to the bedside potty, but she has yet to really be able to bear weight on her legs.  I try every time she transfers, but her knees buckle and she collapses into me.  (I've got her!  Don't worry!) PT didn't come today, so I'm hoping that tomorrow they will be able to work on that a bit.   Abby doesn't have a pain pump this time, which has been a little more of a problem.  Before, we would just push her button before moving her.  Now, all she can get is a rescue dose of Dilaudid every 4 hours.  That takes about 1/2 an hour to get, 5 minutes to infuse, 5 minutes to flush, and another 5 minutes to begin working.  Not so speedy!!  This is especially challenging when we never know when therapists are comi...

Abby is out of surgery and we met with the surgeon.  Both long rod veptrs were taken out to make room for the Shillas, but he is hopeful that these will take their place.  Everything went as planned and she did well throughout.  We will know more when we start getting her moving in a few days.  For now, we can call the surgery a success. We are in the PICU waiting to see her.  The updates may not be as frequent now because my obvious focus is my girl!  I'll try to post something late tonight.

The actual surgery started at about 10:30.  It will be around 6 hours from here.  Updates are limited because they are only allowing essential personnel into this surgery.  That's good in that it is limiting the risk of infection during a complicated surgery, but it means the family liaison doesn't get too much information.  We are hanging in there.  

Today's PICC placement was easy and uneventful.  She was back in the playroom by 10:30!  It has been nice to visit with all of our friends on the surgical floor.   This evening has been rough.  Abby has been really upset and crying off and on.  She is definitely much more aware these days. I spent almost an hour holding her and singing.  She has finally fallen asleep now, which is why I'm later writing this. Tomorrow will be a long day.  Surgery starts at 8:30 and will be around 7.5 hours long.  She is actually the only case booked in that OR tomorrow. The family liaison is good about giving updates throughout the surgery, and that's our lifeline.   We met with many people today who reminded us of just how big this surgery is.  It sounds like this will be her toughest one yet, and many of the others haven't exactly been easy!  The floor has been abuzz with the "excitement" of this innovative surgery, which is both slightly humorous ...

Tomorrow is the big day, and I'd love to show Abby lots of purple pictures when she wakes up after surgery!  She really loves seeing all of her family and friends wearing their purple--especially the doggies.  :)  Tag me on Facebook with the hashtag #purpleforabby so that they are all in one spot and easy to find.  Thanks so much for your support!

We met with Dr. Campbell and Dr. Cahill today.  Turns out, they've been talking about Abby a lot--just not filling us in!  So at least we know that the decision was thoughtfully made.  Dr. Cahill will do the surgery with Dr. Campbell assisting, since he is the one familiar with Abby's "interesting" anatomy. She has a complicated kyphosis and there's no perfect answer.  They will use a Shilla procedure, which is a new special cover that kind of expands itself as her spine grows.  This allows them to not have to fuse as much, therefore allowing for more spinal growth.  They will fuse T1-T6 (not in the c-spine as once thought).  Even with this procedure to limit the fusion, she'll be pretty little and the fuse could constrict lung development.  But the kyphosis already is anyway, so it's a toss-up. Not doing it would mean her kyphosis could sever her spinal cord, since it's progressed so rapidly.  That statement freaked me out a bit, so we are d...

We heard back from Dr. C that he wants to do a limited spinal fusion with instrumentation to correct Abby's cervical kyphosis caused by the last veptr surgery.  It was a 2-sentence email that left us with a million questions, so now we are going to CHOP on Friday (2 days from now) to have a sit-down and iron all of this out.  I think driving 8 hours in one day will be worth it if we get some real answers.  We emailed all our questions, but we are sure that those answers will bring about more questions...it's just easier to talk face to face and the nurse practitioner agreed. Abby is understandably sad and downhearted, but her cousins and I went to Five-Below while she was at PT.  They each picked out something to cheer her up, and it worked. :) We would appreciate your prayers for clarity and communication as we meet with the team on Friday!

I haven't updated about Abby in a while, because there's not much to update.  She's still in pain and unable to walk for more than a few minutes at a time.  Thank goodness for the tiny kid carts at Trader Joe's that allow her to walk while acting as a walker!  Holding her head up is very painful when she is standing.  Her ENT, who knows Abby very well, was shocked to see the changes in her ability.  He said she had better be doing jumping jacks the next time he sees her! We are still waiting for Dr. C to figure out what to do.  I emailed on Monday and he is on vacation this week.  I will be emailing again next week in hopes that we can finally get some answers.   The researching I have done has shown me that whatever he decides to do will be complicated, painful, and challenging. It could require a lengthy hospital stay.  Right now, we are just praying that this can be repaired.  We realize that she may very well be out of school for a g...

If you've been following me for a while, you have heard me talk about the "Hurry Up and Wait" method that hospitals love to use to torture families.  You know, the whole idea where the doctors make something seem so urgent that it needs to be taken care of right away... and then ...you wait. Case in point:  Abby's back looks really different now.  There's a piece of the rod sticking up that is very visible under the skin.  She had a bad fall on Thursday, so I decided to contact CHOP to let them know that things weren't looking right and that she had increased pain.  After sending pictures of Abby's back on Tuesday, the nurse practitioner urged me to go get xrays right away.  By the time I talked to her, it was too late to go to Hopkins that day because xray would have been closed.  I took Abby there on Wednesday, got the disc, and contacted CHOP right away to let them know that the xrays were up in the system. Meanwhile, yesterday evening I shared ...

Yesterday was quite a whirlwind!  We left the house at 6:30 am and got to CHOP around 10:45.  Abby got Xrays and then we saw the team.  Basically, what has happened is an unforeseen complication where the hump that was supposed to be corrected by the long rods has been pushed further up the neck. (Kind of like pushing down a bubble on wallpaper, only for it to pop up somewhere else).  We are playing whac-a-mole.  Yay. Dr. Campbell is going to do something, but her "unique" anatomy makes it a challenge.  She got a ct scan today to give him more information.  He has an interdisciplinary conference next Friday and is going to discuss with the team to see if they have ideas.  In his words, "all of these kids are special and I've never seen the same problem twice."  So he has to figure out what he is going to add to fix the problem.  We know that there will be additional hardware added soon, but we will know more next week.  We are hopin...

I know I've been neglecting my blog, so I wanted to do a quick update on Abby's progress.  She's been getting stronger every day, and even walked 20 minutes on the treadmill yesterday!  Cartoons are a wonderful thing. :) We have noticed that she is still walking with her head tilted.  She does this after every surgery, but this is longer than usual.  Her OT is also a little concerned, and feels like she is meeting resistance when she manipulates it.  Abby has a lot of pain when straightening it while standing, so it may be that the rod is blocking it.  This could just be what we have from here on out. We are still working on it.   Other than that, we have been enjoying the nice weather and the first few days of summer!  Purple lightning (the wheelchair) accompanies Abby out in crowds for safety.   Abby will go to a 3 day camp at a local art center next week.  The director wasn't quite comfortable with Abby's needs, so Caleb and I will st...

Abby had her first day of rehab today, and she did pretty well.  There was a little miscommunication and a student intern came to work with her...not what I had in mind.  I don't usually go back with Abby, but I asked to this time.  She wanted Abby to do 10 consecutive minutes on the treadmill at a 1.0 incline, which is her baseline.  She did eventually do 10 minutes with multiple breaks, but the incline only lasted 3 minutes.  I was pretty happy with those results, but the intern wasn't.  Turns out, she didn't know a thing about Abby.  When our therapist did get out of her meeting, she took over the session and then I felt comfortable enough to go back in the waiting room like usual.  She apologized several times for the miscommunication, even though I never said anything about it. It all went downhill after OT, and Abby spent the majority of the rest of the day yelling at me.  Yay.  I love that.  Deep breaths and a lot of tough ...

Abby is getting better every day!  Pain control is still an issue, but I talked to orthopedics yesterday and they upped her meds.  She has been much better today though, and only had one dose in the morning all the way until bedtime!   Abby got an adorable gift yesterday from Feel Better Friends!  This doll was made to look just like her, scars and all! The doll has a gtube,  A Trach scar,  And even Veptr scars! She came with several outfits, including an Elsa dress! It is adorable and came at the perfect time! Today, we ventured out for the first time to enjoy a free donut with Amy and Lucy on National Donut Day!  (And can I just say I am acutely aware of the distance of the handicapped parking from the door right now?!  But she made it!) With a bit of convincing, Abby walked her doll in the stroller down to the bus stop. This was the longest distance she has gone, and she did sit in the stroller on the way back.  But she is making steady pr...

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.