Life as a Leach

Well, it appears that the brace was short-lived.  Abby's incision wasn't healing well and was started looking pretty nasty.  The brace runs against the area of her kyphosis and is keeping it from healing.  I sent pictures to our surgeon on Thursday and he said to take the brace off.  After some emailing back and forth to discuss how long, he said that it needs to stay off until her incision is completely healed--and at that point, the brace won't do any good.  So...no more brace. Abby is thrilled, because she pretty much hated it.  Matt and I are conflicted.  While it's much easier on us not to have our daily fight to get the brace on Abby, she was much safer in it and her posture would have improved as well.   Her wardrobe suddenly improved tremendously, since button-Down's and leggings were about all she could wear with the brace.  In other news, does anyone need some plaid shirts?!

We are going home tomorrow!!!  Things are done a little differently in rehab, so this date is pretty scheduled and definite.  We have known for a few days that it was the goal, but Abby had to prove she was ready.  She got all of her sign-offs today and her therapists have communicated with her school and home therapy center, so....WE ARE READY!!  Yippee!!!! We are thrilled to be able to head home and close this chapter of the novel entitled Rehab. :). But I will say--if ya gotta go to rehab, KKI is most certainly the place to go!!  We have had an awesome experience and I have been very impressed.  If you know me, you know I don't hand out undue praise!  This facility is truly amazing! Thank you for all of the prayers, well-wishes, cards, texts, gifts, and meals for the boys.  We love you all!

Abby and I enjoyed our aquarium trip with some KKI friends today.  The trip coordinator is fantastic and so much fun!  Calypso the sea turtle was putting on a show for us today, which is unusual because he usually likes to hide in the coral reef.    We also got to watch lots of divers swimming with the fish cleaning the coral.  I've never seen so many divers in there at once! Another favorite was the dolphin training show!  The Dolphins were showing off, so it was fun watching them do their tricks!  We got a selfie before the show started. After getting some pizza, we headed back "home" to the hospital.  After a little play time in the therapy center, Abby's irun4 runner Ally came to visit with her husband and little boy!  It was fun to play with them! Today was a great day!  Tomorrow is back to the grind, but I can see the light at the end of the tunnel!!

I went home (!!!) last night in order to be able to be a photographer for a 5k memorial race for a sweet little guy who was gone way too soon.  It was a fun, bittersweet morning, but I was happy that Caleb and I were able to head up to KKI to spend some time as an entire family.  Matt and Abby did just fine together last night and this morning, but we like being together!  We played air hockey and Minions Monopoly, then painted some butterfly magnets.  We all enjoyed dinner together before they left, so it was a really nice visit.  It's just that they are never long enough! We are all ready to be back together.  I believe it will be soon! For the time being, Abby and I will enjoy a trip to the aquarium tomorrow with some of our friends from KKI.  :)

Abby rocked pt today, shocking us all by walking all the way through the tunnel to Hopkins!  She did take some breaks, but she did 6 and 8 minutes consecutively with a hand! We were thrilled!  She ate super well today too, enjoying the Doritos that her feeding therapist brought her. :).  She started a tiny bit of school today too, which is at least a step in the right direction.  I don't think going back to school will be an issue though.  She does so well! She enjoyed some time this evening in the therapy center, playing Minions Monopoly, The Price is Right, painting a lion keychain for her backpack, and beating on some drums.  There's a new little girl who had a spinal fusion as well, so Abby and her have been playing.  Her family is very sweet.   On Sunday, we will be going on a field trip to the Aquarium!  She was really excited when they told her!

Abby took a little more convincing today when it came to therapy, but we managed to be productive.  She is very reluctant to let go of my hand when walking, so I often have to be conveniently carrying things so that my hands are full!  She caught on to it today and was some kind of bitter!!  Her walking is getting better though and she is definitely getting stronger. She had a rough morning because she REALLY didn't want to put her brace on this morning.  It's Abby vs the Brace every morning, and she put up a good fight today.  The brace (Momma) always wins in the end though!  Once it's on, she is okay.  It's getting the brace on that often resembles a wrestling match. Abby's Grammy came to visit today, and they had a great time playing!  Abby took her to the therapy center and they played Barbies, then we played Old Maid up in her room.  Grammy brought her a little bird that chirps, talks, and records what you say, and Abby loved it!   ...

Abby worked super hard in pt today, doing lots of walking unassisted while hunting for princesses and making words with magnet letters while standing.  She also did a great obstacle course to bring me some silly hats!  Her therapist is great and has really been creative with how she gets Abby to work. Because she worked so hard during PT, she got to spend some one-on-one time with a therapy dog named Lucy Lu!  She played catch with her, brushed her, gave her a check up, and cooked her some food.  It was so sweet and Lucy was really cute!   We have been working on eating with OT, which is a slow process, but she's getting there.  She ate 1/2 a cupcake today and some cooked carrots.  This evening, I enjoyed a delicious meal from a restaurant in Little Italy, thanks to guest relations.  They provide dinner for caregivers every Tuesday and it was a welcome change from the same old hospital food! (Or from the cup of peaches and applesauce off of Abby's...

Abby's first day went well.  We eased into it with a nice long break between therapies, so Abby had plenty of time to play and rest.  She was fairly cooperative, and I hung back to allow the therapists to establish their place as the authorities.  Otherwise, she would never leave my side!   We also enjoyed a nice visit with my cousin's wife Mary, who has been through more than her share of medical stuff with her son too.  It was really nice to chat and Abby enjoyed playing with her.  Later this evening, Caleb and Matt came to visit.  Abby always loves when they are here and hates when they leave.  It's never a long enough visit.  I miss my guys too.  It's not easy. I have to say that I am so impressed with the staff here.  Everyone we have encountered, from techs to nurses to therapists have been excellent.  Everyone is attentive, great with the kids, and focused on the work.  The therapy center is fantastic and Abby loves...

Today was a nice day of relaxation!  There are no therapies on Sundays, so we just hung out.  Abby slept until after 9 and then we headed to the therapy center (playroom) after breakfast.  They have some great Barbies that Abby loves playing with!  After her lunch, we strolled to Hopkins so I could get some food and we visited the gift shop.  Abby went back to the therapy center for more play time while I got a quick shower.  Any day I get a shower in the hospital is a good day!  The therapy center staff is excellent and they really love the kids, so I felt comfortable leaving her for a little while.  I've been really impressed with all of the staff here! Our roommate's family is so very sweet!  I have really enjoyed getting to know them.  They even offered to bring me food from The Children's House where they take turns staying!  They really love their son and are committed to helping him in any way they can.  I am so thankful...

Really, I do!  But I don't love when he tears up my daughter's brand new Calico Critters that she earned from Nina by working so hard at pt.  I don't love when he tries to steal her food. And I really don't love when his 100 pounds runs into her multiple times and I have to catch her once because she's about to fall over.  The mom didn't even tell me about the toys until later, and she wasn't at all apologetic.  In fact, she told me the dog chews toys all of the time!  Even when Abby was sobbing over the dog eating her toys, she didn't really seem to care.  She made it pretty clear she really didn't want us there. Since this became a safety issue with the dog running into her, I asked for Abby's room to be moved.  They have had multiple problems with this parent and completely understood.  After some thinking, they placed Abby with a little boy who has a very nice family and is very quiet.  He is pretty much bedridden and I haven't heard him ...

Today has been a whirlwind.  After a morning of being in limbo wondering if we were going to get to rehab (thanks, insurance!), we finally made it to Kennedy Krieger.  Upon entering her room, we were bombarded with doctors, nurses, and therapists asking us questions and assessing Abby.  At one point I was going between 3 staff people answering different questions!  We were all overwhelmed and Abby pretty much shut down.  I couldn't blame her because I was pretty close myself! We finally got a tour of the facility and were able to ask some questions, so that helped.  Then my parents and Caleb got here, so they enjoyed a little time with Abby (not nearly enough, since visiting hours ended at 8). Like every big change, there's a learning curve.  KKI is pretty strict and I have to have my bed made and be ready to go for the day by 7 each day!  I'm apparently supposed to give Abby a bath in the mornings, but that isn't going to happen. I am more of a n...

Can't sleep, so I might as well write!  :) Today was another busy day of dealing with insurance issues, doing lots of therapy, and making the best of being in the hospital.  Abby had two sessions of art therapy, which rank right up there as a close second to music therapy, so she was thrilled!  She also had a tough session of PT, where our therapist did lots of stretching and exercises to strengthen weak muscles.  Abby loves to exercise about as much as I do, so this session included lots of crying and fussing!   She is getting used to the brace, but if I make a comment like that, she makes it quite clear that she hates it.  :). She's allowed.  I would too!  At least she isn't fighting me anymore when I put it on her. When we are on our own, I try to incorporate therapy into our activities as much as possible.  She opened a present of bubbles today and was excited, so I got her in a tall kneel by the bed and had her blow bubbles.  We alt...

Holy moly, recovery is a roller coaster!  Abby is like a hormonal teenager with her highs and lows!  One minute, she's laughing and enjoying music therapy or crafts, and the next minute she is screaming bloody murder over the injustice of having to take 5 bites of food.  Shew! She is still making it quite clear that she HATES the brace, but she is at least resigned to wearing it.  I got permission to remove the neck piece during meals so that she can eat easier.  I have lost count of the number of times I've reminded her "you can do hard" through the therapy, pain, and brace-hating. 😕 Overall, today was productive.  Abby got her PICC line out, I made a lot of phone calls to insurance to work on her rehab placement, she enjoyed music therapy,  played bingo, and painted a trophy.   She also got her post-op Xrays done this afternoon. The front view.  The straight rods are the new Shillas. On the left is an X-ray from July and on the right is to...

We are making progress on the rehab front.  All of the Evals were done and the request was sent to insurance for approval.  Insurance would only cover a MD facility, so they put in for Mt. Washington.  Unfortunately, they don't have beds for the rest of the week.  The earliest would be Monday.  Now, the case manager is hoping to get a one-time approval for her to go to rehab here because we could move in tomorrow.  It seems silly that they would pay for an acute care facility while we wait for a bed at MW, but won't pay for us to move to rehab here.  Of course, this is the same insurance company that REQUIRES us to take a bunch of medical supplies we don't need, simply because Abby has a gtube.  We aren't allow to refuse them.  🤔. We are hoping to get an answer about rehab tomorrow. This morning was filled with PT, OT, art therapy, and Legos!  Building the set and playing with it occupied her for several hours.  Score! PT brought A...

Today has been a really busy day!!   This morning, Abby got a visit from Queen Elsa herself!  This sweet college student dresses up as princesses for parties and wanted to spread a little joy at the hospital.  Abby loved it! Then, Abby had PT with her primary therapist who takes on the VEPTR cases.  After having Abby walk and attempt the stairs (SO hard!), she felt that Abby could benefit from intensive therapy before heading home.  The rehab doctors did an evaluation on her later today and agreed that inpatient rehab is necessary, so she will be heading there pretty soon.  The timeline will be determined by insurance, bed availability, and when her brace comes.  She was supposed to get it today, but when the people came to fit her,  they determined it didn't fit.  Turns out, the guy who measured her wasn't overly accurate....oops.  She was remeasured and also scanned to create a digital image of her back, so it will hopefully be done ri...

Sorry for not posting yesterday.  I spent the night at RMH while Matt stayed with Abby.  I basically ate dinner and went to bed! Abby is doing great, medically.  She will get her brace today and we really don't think there's a medical reason to keep her.  Her recovery in that respect has been amazing! Physically is a different story.  Walking is still very hard and her left foot turns out and drags a little.  She requires a lot of support when walking. We haven't even attempted transitions, bending down, or stairs.   We should find out today if they want to get the ball rolling for rehab.  It takes a while to get insurance approval and secure a bed, so I'm not sure when it would happen.  Meanwhile, we will just keep plugging away!

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 had a great night!  No oxygen, no desats!  She slept pretty well and has only had Tylenol since coming out of the OR!  I am amazed!  They said she will probably move to the floor after rounds.  Dr. Cahill came in and he was also shocked by how well she is doing.  We will see how it goes once we get her up and moving a little, but we are grateful for a good night!  She is doing so well!! Thanks be to God for protecting and comforting my girl!  We are also so humbled and grateful for all of your concern and support!  The purple pictures and well wishes throughout the day kept us going while we waited during surgery.  We are blessed with so many people who love Abby and our family.  Thank you!! 

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 anesthesiologist just came out.  He had to go to a meeting, so he traded off. (The fellow is still there, along with a new attending).  He said she's been great the whole time.  They still have a bit of work to do--he guessed maybe 2 more hours.  But everything is going well and he quoted Dr. Cahill as saying "her anatomy is more normal than I expected."  Love hearing that!! No one has ever talked about her anatomy that way before, that's for sure! We are still hanging in there.  I'm on my 8th episode of Grey's Anatomy, attempting to lose myself in a world where "push one of epi!" Is an instant lifesaver, chests are routinely opened in the ER, and the residents do everything from surgeries to blood draws.   It's my stress relief! #dontjudgeme

Dr. Campbell just came out.  They are about halfway done.  They took out the right long rod because it was in the way and still have quite a bit of work to do. She's doing well, but it will be 3 hours or so.

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.  

Abby went back around 8:40.  She was calm and only complained that the meds stung when they went through the PICC. Her song of choice today was "I Know it's Today" from Shrek the Musical, which she loves and knows every word of.  I couldn't get her to sing with me, but I did get a few tiny smiles and some of her signature eye rolls. :). Love that girl's sassiness! Now is the hard part.  It will be a long day.  Thanks for all of your prayers and purple pictures!  Abby loved looking at the in pre-op!

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!

Now that Abby is a big kindergartener, we decided she was ready for an official chore and a little more responsibility.  (She already helped clean up her room and the playroom and empty the dishwasher, but she didn't have a daily chore to call her own.) So we passed Caleb's job of feeding Chloe on to Abby and he's now in charge of vacuuming the kitchen with the floor sweeper.  They are both thrilled with their new jobs!  Seriously! Caleb vacuums the floor like he is driving a race car and makes motor noises all the while.  Abby lets out a little squeal of joy every time she puts a scoop of food into Chloe's bowl.  They both crack me up!   So what daily jobs do your kids have?