Monday, June 9, 2014

No Easy Decision

We're facing big decisions, folks. Ones that the doctors don't want to make for us because, as our ENT put it, "It's anyone's guess.  Don't believe any doctor who says he knows the right answer, because it's just not true."

We met with the new jaw surgeon today at Hopkins.  He is extremely knowledgeable and has a lot of experience with jaw distractions, which is why they brought him on.  We were really impressed with him and the before and after pictures he showed us of his past patients.

During the distraction, an L-shaped cut is made on both sides of the jaw and metal bars are put in.  The bars are attached to external screws that go behind the ear, which we will turn for 14 days.  The external screws will be removed after that, but the bars will stay in her jaw for several months.  Because of Abby's airway issues and the swelling around her face due to the surgery, she will be intubated and sedated for about 5 days before they attempt to extubate.  We should expect for her to be in the hospital for about 10 days.

We had a long conversation with the jaw doctor.  Long story short, he is concerned that Abby's airway is going to cause problems for her during/after the VEPTR surgery.  He was encouraged that she was successfully intubated, but he is fairly concerned that the swelling from surgery will cause her problems when her airway is already so tiny.  We don't want an emergency.

He also reminded us of a hard truth that we know too well:  with her airway and lung functioning being what they are, Abby is only a common cold away from the PICU.  We refuse to live in fear, so we don't isolate her from others.  We use a lot of hand sanitizer and try to avoid sick people, but now that she doesn't have a trach, we have eased up quite a bit.  But that fear is always there in the back of our minds.  Today, it was pushed to the forefront again.

His initial recommendation was to do the jaw surgery before the VEPTR, but that would mean pushing the VEPTR back.  Because the VEPTR will address the lung functioning, it is important to do soon too.  If we keep the VEPTR when it is, the jaw surgery would be in November.  We are tentatively scheduling it to get it on the calendar while we make our decision.  If we do the jaw surgery before the VEPTR, the earliest it could be done is September, pushing the VEPTR back until at least November.  But then that could mean she could lose more lung functioning between now and then.

We've got two big surgeries that absolutely need to be done. We know that. The question is, which one needs to be done first?

We have already consulted with our awesome pediatrician and ENT, our top two doctors.  Our pediatrician is calling our ENT to discuss it, and our ENT had a lengthy conversation with us tonight.  He agreed that the jaw surgeon had very valid concerns, and that Abby's surgery will be complicated.  No doubt.  He feels like in order to get the full benefit of the jaw distraction, we would have to wait 6-12 months after that before we did the VEPTR.  We can't wait that long and he knows that.  He also said that Abby's airway is tiny and the distraction won't "cure" that.  It will help and will get rid of the obstructive sleep apnea, but she will always have a difficult airway. (yay)  He encouraged me to continue to be vocal about Abby's airway with the doctors during her recovery from the VEPTR and not to let them attempt to extubate her until they are absolutely certain she will be okay.  We talked candidly about the possibility of Abby needing a trach again, but he assured me that it would be short term (less than a year) because she has proven that she can do it on her own.

The jaw doctor discussed the trach with us as well, and he told us that he gave Abby a 1 in 10 chance of needing it.  And I burst into tears.  And now he thinks I'm mentally unstable.  Add that to the chart.

I'll be honest.  The T-word makes me shudder.  It's not trach care or suctioning; that stuff is fine.  Been there, done that.  It's the nursing drama, the having to get a doctor's order for every single little thing (ie: do NOT wake my baby up to change her diaper!  True story!), having people in your house all of the time, the grand event it is to go anywhere at all because of all of the stuff you have to take with you, living in isolation because of germs, having to send a nurse with her to school and keeping her from being independent, not being able to drive by myself with her...ugh.  As our ENT said, he can't try to downplay trach life like he does for some of his other patients, because we know the truth.  We know how much of a life change it is!

But it's not about me.   It's about a little girl that I love to pieces and want to watch grow up.  So if a trach will keep her with us, then so be it.  But I will be praying fervently that she will be extubated perfectly with no complications.  

So new prayer requests:

*  That we will have clarity in our decision.  I am terrified that I will choose wrong.

*  That our doctors will all be in agreement.  This would make the decision-making process a whole lot easier!!!

*  That we will get to speak with our orthopedic directly.  We have some big things to discuss with him and don't want to have to go through the nurse practitioner.  I am hoping I won't have to get pushy.

*  That NO trach will be necessary at any point!!!!

*  That Abby will be successfully intubated and extubated with no concerns and all of the worrying and sleepless nights will be for no reason at all.

God got us this jaw appointment so quickly for a reason.  I know it.  I will not make light of the fact that this jaw surgeon had some very valid concerns.  I am praying that we will do what is best for Abby.  I just wish I knew the answer.


Blandine said...

Julie, I have read your blog for a while now -came through Reagan's blog- a,d I feel like it's time to leave my first comment, to wish you all the best. I don't fully understand the medical specifics but I totally get that doctors' agreement would help!

Donna West said...

How difficult as a Mommy to know what to do for your baby girl. I just found your blog and my heart goes out to you. I will pray for you and Abby. God bless and guide you. Hugs.