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!!