Friday, January 10, 2014

Faith's surgery

I hope you have assumed by now that Faith's surgery went really well.  We have already seen a huge difference in the amount of congestion and in her responsiveness to sound and words.  She has started babbling more and just generally seems healthier since her surgery.  

We had to be at the hospital at 6:00am the day of surgery so our day started at 4:30am to give us enough time to get things packed up and make it to the hospital on time.  This mama was not a happy camper.  I am the opposite of a morning person.

Faith was groggy, but happy.  For all she knew we were going on an exciting adventure that did not involve needles and drugs and people poking her everywhere.
It's a little sobering to be sitting in the waiting room at a children's hospital.  It's also pretty humbling because it gives you perspective on the challenges your kids face (and how small they are in comparison to the things other families are facing).

We didn't have to wait long.  They brought us to the pre-op room and put Faith in a gown that was huge on her.  How can someone look so cute in a hospital gown, I ask you?
I was really hard to keep her entertained so that she would sit still long enough to get her vitals.  But nothing solves that problem like a good ole piece of paper to wrinkle, rip and ingest.

That and wearing Mommy's hat.
Things were going swimmingly until the nurse took a listen to Faith's lungs and didn't like how congested they sounded.  When the anesthesiologist took a listen, he didn't like it either.  They asked us if we were sure we wanted to do the MRI since it was the MRI that required her to be under anesthesia for longer. They were concerned that her congestion might make it necessary to put in a breathing tube which could put her at risk of infection or other complications.  Up until this point, they told us we would be home within three or four hours, but now the anesthesiologist was telling us that she may have to stay overnight if things didn't go well.  In fact, he said there was a 50% chance that she would have to stay overnight.

I started to second guess our plans.  Did she really need the MRI at all?  Was I pushing for something that wasn't necessary?  Should we wait?  Should we do it at all?

Our choices were to go ahead and do the surgery but reschedule the MRI for another day, or to continue with our original plan and do both at once.  The whole reason we were doing both at once in the first place was that we were trying to minimize the amount of times she has to be put under anesthesia, so I wasn't a fan of doing them separately.  But I also wasn't thrilled with being put on the spot to make a choice that would potentially put my daughter at risk.  It's times like these that I am so aware that I am not her only mother.  I wonder what her First Mama would do in my shoes - if she would make the same choices.  I find myself thinking of the worst case scenario and imagining what it would be like to tell her that something happened to her daughter because of a decision that I made.  Add all this to the fact that it was 6:00am and I do not function well at that hour.  Have I mentioned I'm not a morning person?

Despite the concerns, our gut was telling us to continue with our plan - after all, she ALWAYS sounded that congested.  The surgeon helped us make our choice by asking if she could have a better day.  Meaning, if we came back on another day would she be healthier than she was at the time?  The answer was "yes," but that those days were few and far between.  In the end, the odds of being able to coordinate a "better" day with a scheduled MRI seemed slim so we decided to go ahead and do the MRI and the surgery.  I tearfully asked the group of nurses, anesthesiologists and surgeons if I was making the right choice, worried I was being too risky.  They said if they thought it was unsafe they would not allow us to proceed, but that they simply wanted us to know that there were more risks involved that we had anticipated.

I think they could tell that I was feeling insecure about our decision because four different people came out to update us throughout the procedure.  The anesthesiologist even made a special visit to tell us she did well - he said he usually just lets the nurse give parents the update.  I played the role of Nervous Mommy well, I guess!  They were very kind and we are grateful for how well we were treated.

I was also grateful for my friends who are nurses who assured me that we made the right choice - two of whom also have kiddos who have special needs and who have had much more intense surgeries than Faith had.  It put my heart at ease to hear their expert opinions that we had made the right decision.

My prayer was that she would do better than expected and each person who came to update us said those words exactly: "She did better than we expected!" I was so grateful for such a clear and obvious answer to my prayers.  What a kind and generous God we have!

Again, we were humbled by the number of families waiting with us for news that their kids were out of surgery.  I overheard one nurse give a family an update that they had about six more hours of surgery to go, and I was grateful once again to be reminded to put our situation in perspective.  Surgery for a little baby is a big deal, but there are many worse situations we could have been facing.

The Husband read a book while I watched a movie to keep my brain distracted while we waited.  (Baby Mama - I may have laughed out loud at the part when Tina Fey apologizes for overreacting and Amy Poehler mumbles under her breath, "I'm sorry I farted into your purse." I may be laughing right now remembering it.  Maybe.)

Soon enough they were calling our names to meet her in the hallway before going to the post-op room.  She grinned when she spotted me and I held her hand the whole way up to the new room.  I was desperate to get my hands on her again, and I was super relieved when they said I could hold her.  They wanted to monitor her for an hour or so to make sure she handled the anesthesia okay.  She was a little out of it at first, but soon enough she was restlessly trying to climb up me and get down on the floor and eat inedible objects and I knew I had my girl back.

The recovery was amazingly quick and she has done so well since the surgery.  The MRI came back negative - the enlarged ventricle is no longer enlarged! - and she passed the ABR hearing test with her new pipes.  The MRI did reveal a sinus infection (which, I believe, is THE most expensive way to diagnose a sinus infection - only the best for our girl!) so we got her on some antibiotics and that combined with the tubes has cleared up her constant congestion miraculously.

She is a new baby!  This might sound weird, but I am obsessed with her upper lip now!  For so long it was covered in dried snot (or just regular old snot) and I never really got a chance to see it, but now it's bare and soft and clean and has a delicious lack of snot on it!  It's clear she is feeling much better and she is definitely talking more and is more responsible to sounds and language.

So the surgery was a success.  I am grateful that everything went well.  They tell us she will likely need her tubes replaced in 6 months, but I'm hoping that once again she'll do "better than expected" and we can spread out the surgeries a bit more.  We were encouraged that the tubes seemed to resolve nearly all of the hearing loss she had experienced which means that there most likely isn't a separate problem causing hearing difficulty.  Time will tell, but for now we are happy to have come out of this latest adventure unscathed!

Thanks for praying for our girl and for following our adventures - big and small!

P.S. If you were wondering where our big kid was during all of this, she got to spend the night at Nanny and Pop's house and was ecstatic to FaceTime us in the morning to tell us that she was eating breakfast before preschool!  We were discharged from the hospital just in time to pick her up from preschool and Miss Independent did great.  No surprise there!

1 comment:

jordanne said...

yay faith! Love the pictures and the good news. I love Faith!