Wednesday, May 31, 2017

Post op day 9

It was a much better day today!!  Abby did a 3.5 hour sprint and 3 hour sprint off the bipap!  She also went to the playroom twice with therapies and was cleared to be able to get up and walk around the unit without a continuous pulse ox.  This makes both of us very happy!  🎉

The other good medical news is that she is cleared to eat what she wants now.  🍩  They are still pumping her full of extra gtube calories, but I'm hoping that will decrease as she eats more.  I thought she ate a great lunch, but the dietician wasn't impressed.  She obviously doesn't know Abby's eating habits!!  Tonight, she drank lemonade and ate 4 packs of butter.  😳


She took a nap in the early afternoon and is also currently asleep.  She always seems to fall asleep right after her sprints because they just wear her out.  I'm not going to let her sleep super long because I want her to sleep tonight...although, that probably wouldn't be an issue anyway!  :)

We were surprised with a wonderful care package from a fellow VEPTR family today.  Abby was thrilled with the fun things to keep her busy.  


I can honestly say now that every day gets a little bit better.  It wasn't true for a while there, and we are thankful for the improvements!

Tuesday, May 30, 2017

Post op day 8

What a busy, traumatic day for poor Abs!  She was awoken at 6 am by the plastic surgeon residents removing her dressing (not very gently!). Then she had a repeat ultrasound of the blood clot in the arm that took over an hour and wasn't overly comfy because they had to look at the deep veins.  The clot is still there, but I haven't heard anything about what they want to do about it.  I expect that I will hear tomorrow during rounds.

A little after the ultrasound, her plastic surgeon checked her back and noticed a bit of skin breakdown from the special stabilizing sutures he put in, so he took them out. Her incision was cleaned and rebandaged.

Abby hasn't been able to "go" since before her first surgery, despite quite a few interventions. They pulled out the big guns today, resulting in a painful hour or so!

PT came soon after that, and Abby was able to walk to short distance across the hall to the playroom--albeit screaming and crying!  She had just gotten settled down playing with a toy when the phlebotomist came to draw some blood!!  So she had to turn right around and go back to her room, which went over very well as you can imagine. The blood draw took 2 tries and lots of digging, so she was wiped out by the time it was done. 

In between all of the torture, she did manage to have a 3 hour sprint off of the bipap in the morning and 1.5 hours in the afternoon before the blood draw knocked her out.  I asked to take her off again this evening after she woke up, so she's been off for another 1.5 hours to get to her 6 hours sprinting off of bipap.

The weaning has been going a little slower than we had hoped because she is so very tired.  Being off, even though she is just sitting, absolutely exhausts her.  I try to hard to keep her awake, but she just nods off!  It's not very easy to take her anywhere right now because she is on continuous monitoring, but I know it would help if she could be more active.  I'm working on it!  I did manage to entice her to play with play dough for a while!  She's also really enjoying having the Meet Felicity (from American Girl) read to her.  There are a bunch of them in the family library, so I think they will help to pass the time and keep her mind active.


She's working so hard!  This girl has gone through so much this admission and I know she's just done.  

Monday, May 29, 2017

Post op day 7

Look who has moved on up to the pulmonary floor!!


We are thrilled to be in a corner room close to the playroom and laundry!  It's really quiet here and she has a nice, big room.  I think we will both sleep much better here!  But most importantly, we are thankful that she is well enough to no longer need to be in the PICU!

I'm still processing all that transpired in the last week.  My girl was so sick and we were terrified.  To see her now, being sassy and demanding, is such a gift.  We are so, so thankful.  Today, I let out a huge breath I didn't realize I was holding.  

In other news, this boy enjoyed his first (coffee-free) Starbucks today!  It was a hit!

Matt and Caleb headed home today.  I'm so thankful Matt was here during the scary stuff and that Caleb was able to spend the three day weekend with us.  We miss them already!

Sunday, May 28, 2017

Post op day 6

Woo hoo for another good day!  Abby was able to be off the bipap for 3 straight hours and did great!  She did another 2 hour sprint before bed tonight.  This one wasn't as smooth because her ribs were really hurting and it took a while to get that under control, but I was able to distract her some by reading a few chapters in a new book.

She still has a ways to go before she can get out of the PICU, but we are hoping that will happen in the next few days.  Today's success was very encouraging!

We did find out that Abby will be on antibiotics for a very long time:  for as long as she has hardware.  Since the veptrs are needed in order to hold her rib cage open and expanded, she will always have hardware.  This would mean she will have antibiotics for forever.  They have very good reasons for this, so we trust them.  It wouldn't be my first choice, but it's the best choice for sure.  

Caleb and I enjoyed some wonderful time together today at the Franklin Institute.  He loves science and learning how things work, and we were able to go totally at his speed.  He has such an inquisitive mind!!  It was good to hang out with him.



Matt and Caleb will be leaving tomorrow and I'm going to miss them so much!  I needed Matt here this week.  It's been tough.

But she's doing better and I'm glad she's well enough that Matt can be comfortable going home!

Saturday, May 27, 2017

Post op day 5

What a difference a day makes!  Abby is doing so much better now.  She had some great awake times where she watched cartoons, played on the keyboard, and even talked a bit!


Abby ended up not getting the PICC line because everyone felt there was too much danger in putting her under anesthesia again.  Instead, we worked hard to switch her to oral pain meds and antibiotics, after making sure she tolerated her feeds.  So far, so good!


I'm spending some time with my boy at RMH tonight.  We played games and did a craft, and are now watching a movie.  I love my boy!  I will be nice to get a good night's sleep too.  


Friday, May 26, 2017

Post op day 4

Abby was successfully extubated at 10:30.  We are so thankful for that!!  It was an uneventful extubation, which is the best kind!  

Abby has pretty much drifted in and out of sleep most of the day.  But the highlight of the day was when Caleb and the Bevards visited!!!  I know she loved having them there, but it was hard for her to show it.



I got to spend some time with Caleb in the cafeteria and I just love that kid!!  He is such a neat boy.  Matt is taking him to do some of the historic sites tomorrow and I am hoping to spend some time with him at RMH sometime this weekend.  We may go to The Franklin Institute too. He needs time with us outside of the hospital and we missed him!


Unfortunately, Abby has a clot in the vein at her picc.  The concern is that it could travel to her lung, which would obviously not be good!  Hematology would normally do anticoagulants, but they can't because she just had surgery. They are pulling the picc and putting in a new one. She had one iv but they put another one in tonight to tide them over until tomorrow.  

Because of what happened the other day, she may have to keep the breathing tube in after the picc placement again.  This is not what we want, of course, but we will do what she needs...even if it's 2 steps forward, 10 steps back.

She also has an ear infection and started different antibiotics for that.  Let's just call that icing on the cake.  

But, she's extubated and on bi-pap.  We are so grateful for that and will deal with these other challenges as they come.  I'm just glad to have my family together this weekend!!!

Thursday, May 25, 2017

Post op day 3

Abby's surgery went well today.  Ortho removed the small section of the rod that had come loose (the length of my pinky) and plastics did another wash out and was able to close.  He did a special kind of extra suture to help take the pressure of the main incision, which sounded like a good idea to me!  I really like him and have been really impressed.

She came back up to the PICU and it's been a crazy few hours.  Her blood pressure was very low and was making everyone rather nervous. They problem-solved and were able to eventually get it higher, although they did pull a dose of epi and have it at the bedside.  That was a little nerve wracking!  Thankfully, her hemoglobin is holding on after yesterday's transfusion.  

Abby decided to show off a little more in the OR today, confirming that she would be keeping the breathing tube in tonight.  It was a little scary to hear about her antics, but she has been much better since being back in the PICU.  I think she's just telling us she's done with anesthesia for a while. :)

She did pass the leak test that they needed to do, meaning that she is moving air and is able to breathe around the tube,  so we are hopeful that she will be able to get the tube out tomorrow.  My sister is bringing her family and Caleb up, so I sent them some pictures so that they would know what to expect.  

For those of you fortunate enough not to be familiar with medical stuff, this is the breathing tube.  It's connected to a long tube, 

Which is connected to a machine called a ventilator.  This one is a million times fancier than ours ever was!  I'm kind of sad that I'm using my vent knowledge again....I was kinda hoping those days were behind us for good.

Abby has 2 drains in to pull fluid away from the incisions. 

Don't mind the creepy floating head--that's just her pillow. :). This is her PICC line, which has quite a few meds running through, as you can see!  I've never seen the tubes split so many times!
And...the meds!  She hasn't had this many in a very long time.

She continues to have her own nurse, and we are thankful that we had both of the excellent nurses we had yesterday!  Abby has gotten excellent care.

We believe that the "worst" is over as far as the infection and surgeries go.  Now, we are hoping to focus on improving her respiratory status and getting her stronger to go home.  She has a long road ahead of her and we really have no timeline for going home.  The setback of intubation definitely increased her length of stay a bit.  I haven't even started the mental checklist I usually do of the things that need to happen before discharge.  However, I am fairly certain we are both done with school for the year!  

I say it every day, but we appreciate the love and concern from all of you!!  Thank you so much!

Surgery update 3:00

Abby went to surgery at 2:30 for another wound wash out and possible closure.  Our ortho also saw on the ct scan she had yesterday that the top screws of the left side had become detached, so he is going to cut that part of the rod off.  

It will be about 3 hours and then she will go back to the PICU. 

Wednesday, May 24, 2017

Post-op day 2 evening

Abby's day started out ok,  although she was pretty sure the entire world was against her when we wouldn't let her have a sip of water before her PICC placement.  See her "woe is me" pose?!


She got her PICC placed this afternoon.  It was quite a spectacle getting her downstairs.  It took 3 staff members, and she was even special enough to require a nurse practitioner to accompany us!  Apparently, she felt like she still wasn't getting enough attention.  


She desatted quite a bit during the procedure and the decision was made that she needed to stay intubated and sedated for the time being.  She will stay this way through the night and for her surgery (washout and potential closure) tomorrow.  They will not take the breathing tube out in the OR after surgery, because they want to see how she does for a little while before they try to take it out.  

She is safe, and the anesthesiologist chose this plan because it's the safest for her.  They are hoping this will give her lungs a break and allow them to heal a bit.  We are hopeful that the intubation will be short-lived, but we are also prepared for it to stay in longer if needed. She has earned herself her own nurse for a while.  All of our nurses have been great, but I'm really thankful for the knowledge and expertise of our nurse tonight.  She is totally on the ball.

Some of you may remember the terrible reaction Abby had to prolonged sedation after her jaw distraction surgery, as well as the pancreatitis caused by one of the many medicines.  The doctors have been made aware of this and are monitoring everything closely.  We are trying not to give her more sedation than absolutely necessary, so she has woken up several times.  

I'm staying right beside her bed tonight because she does get agitated and has reached for her tube a few times.  If I can calm her and avoid them from having to give her more medicines, I will gladly do it.  I won't leave my girl. 

Her hemoglobin has fallen even further now, so she will be getting a blood transfusion in a little while.  This will make her OR time tomorrow safer as well.  She's also getting some potassium because that has become pretty low and can affect the heart.

Thank you all for your prayers.  Please keep them up!  Our girl is in need of many.  We are beyond thankful to God that Abby got to CHOP when she did before this got even worse. 

Post op day 2

Thank you all so much for your prayers and concern!  

The afternoon/evening was better.  OT got her sitting up and she stayed there for 1/2 an hour playing on the keyboard and using play dough.  

Both of her IVs blew at the same time, but they were able to get another in with ultrasound.  Her hemoglobin was a bit better, which made us happy.

She was quite feisty all evening and her number one complaint of all is the STICKER for the c02 monitor they have on her (an alternative to constant blood gases, which I explained to her multiple times).  I told her of all the things she had going on, that wasn't a big deal!  The nurses and staff quite enjoy her. :). 

She slept well on the bipap and her respiratory rate was in the 30s with just a few desats.  This was a huge improvement from the night before.  Things are looking up and will hopefully continue to improve!

Tuesday, May 23, 2017

Post op day 1

We met with the PICU team this morning.  We've been writing this for a while, but there have been lots of doctors and staff in here. Abby's respiratory rate has been very high, so they switched her to bipap with some additional support. 

They are also treating her for sepsis.  At this point, it is in her blood stream and affecting her respiratory system.  They are watching her very closely and she will stay in the PICU for the foreseeable future.  They are also running lots of frequent labs.  We are waiting to meet with the infectious disease team.  Abby is awake, alert, and feisty.  When Matt took a monitor lead sticker off without warning her, she yelled, you took the darn sticker off!!"  So she's sick, but still sassy.  :). 

Our girl could really use your prayers.  I've often said we live "in the woods" and are never really out of it, but this is a scary time.  It is so easy to allow our minds to go to dark places, but we are fighting to stay positive and proactive.  We are thankful for every sassy thing that comes out of Abby's mouth right now!!

Monday, May 22, 2017

Surgery update 8:30

We are with Abby in the PICU.  Everything went smoothly, but they just brought her here for closer monitoring. Dr. Cahill found infenctikn in multiple places, and the right VEPTR was eroded and infected.  Everything on the right side was removed.  The left side was infected, but still in tact.  He decided to try to keep it in, in an effort to support her spine.  It was thoroughly cleaned and may be cleaned several more times before closure.  We will talk to Plastics tomorrow to see how they would like to proceed with that.  We will also be meeting with infectious disease to discuss PICC placement and the possibility of long term IV antibiotics.  As much of a pain as that is, I really think it's necessary.  We need to kill this infection once and for all!

She has been awake and angry, mostly complaining about her 2 IVs.  She can't understand why she needs two! (Usually, she has one and the PICC line, but she doesn't count that!).   She has fallen into a pretty hard sleep now, despite the hustle and bustle of the PICU.

It's been a long day and sleep in the PICU is a joke, so I'm going to try to catch some while Abby is sleeping peacefully (thanks to our good friend Dilaudid). Thank you so much for all of your prayers today.  We feel very blessed to have so many people who care about our family.

Surgery update 5:45

We still have a ways to go.  They have opened up both sides and are washing everything out, but no hardware has been removed yet.  She will go to the PICU instead of back to the ortho floor because it was more involved than they thought, but we don't have details on that.

Surgery update 3:45

Abby just went back for surgery. She did really well going to sleep and was very calm.  The surgery should be about 3 hours.  There are a lot of unknowns, but this infection has got to go.  That's the #1 concern.

The Plan

I spoke to the plastic surgeon this morning.   He spoke to Our orthopedic surgeon (who is already in surgery) and the plan is to remove all of the hardware, leave the wound open, attach a wound vac, and close later this week on Wednesday or Thursday.  They are concerned about her high white count and think the only thing that will get rid of this is to take out all of the hardware. :(. We will deal with the kyphosis later, but this is what needs to be done right now.

Ortho has 5 cases today, so Abby will probably be last since she is an add-on.  One of the wonderful NPs came in to see us and cried when she heard the plan because she knows what a hard year this has been.  All this pain and suffering, only to have the hardware taken out.  I'm thankful she gets it. (She made me cry, of course!)

Abby has gotten sick 3 times today and is feeling pretty miserable, so she's getting some anti-nausea meds and some pain meds to get her comfortable and hopefully make today a little bit better.  

Wednesday, May 10, 2017

Guess what?!?!?!?


After nearly 5 long months, Abby got her halo off today!!  We had appointments at CHOP, but we were NOT expecting for it to be removed today.  That was a very exciting surprise!

 She had a Plastics appointment to check the wound first.  It is looking much better and he complimented us on our hard work.  He changed the topical medicine we are using and  said to keep debrieding the wound twice a day.  We have a pretty good routine for that at this point, so it's ok.  We will see him in a month.  

Then we went to Ortho and got X-rays.  After he reviewed the X-rays, he came in and asked Abby if she wanted some good news!!  Eek!  We are THRILLED that her halo days are over!!  While it's a real possibility that she may go back in a halo in the future, it is nice to be done with it at the moment.

Now, Abby is in a hard cervical collar.  Yes, it's still a brace, but she has MUCH more freedom now!!!!  She can take baths, is able to move her head slightly to look around, is finding it easier to walk, as can do her hair, hugs and kisses are much nicer without a bulky halo in the way, and best of all....SHE IS ALLOWED TO RIDE IN THE CAR AGAIN!!!  Being home bound was getting harder and harder and Abby was starting to become resentful that she was missing out on things, so this is probably the best part!  We still need to be careful (as always!) but it will be nice to go places as a family again.

So here's to being halo-free!  Thank you Lord for this unexpected blessing!  We are grateful!!!

Wednesday, May 3, 2017