Thursday, July 16, 2015

This kid is a rock star

So Anna had surgery last Friday to hopefully correct, or begin the process of correcting, her kidney reflux.  Rich and I met with her urologist at the end of June for a consultation and to go through the options, of which there were two.

Option Number One was the deflux injection.

Pros:  It's a noninvasive and quick procedure.

Cons:  It still requires surgery and has an 80% success rate.

Option Number Two was full out surgery.

Pro:  The success rate is considerably higher than that of the injection.

Cons:  It's big time surgery with a c-section type incision and recovery time.

Option Number One seemed like the obvious way to go but apparently some say, why bother, it may not work, and jump right to the surgery that will work.  Well, I'm making it seem like the obvious decision but spina bifida complicates matters a bit.  If you have spina bifida, chances are high that you have a neurogenic bladder and those with neurogenic bladders have a lower success rate with the deflux injection.  We were also told that they may not be able to do the injection if Anna's bladder is inflamed but they wouldn't know if her bladder was inflamed until the surgery was underway.    

The last minute urodynamic study was completed to gather more data as to whether or not the deflux injection was a viable option.  After the study, her urologist said that she was a good candidate and surgery was scheduled for the next week.  We waited until after our NH vacation to tell Anna what was happening.  I first told her that we needed to go see Dr. P again.  She was not too happy and asked if he was going to do the same test.  The urodynamic study was extremely uncomfortable for her so I told her that he did have to do a test BUT she would be sleeping through it.  She was okay with that.  I specifically did not use the word surgery.

We were told to be at the hospital at 12:30 (afternoon) and because she was going to be knocked out, she wasn't allowed to eat anything after midnight the night before.  She had a snack of yogurt and granola right before bed and because she's not a big fan of eating first thing in the morning (neither am I), I was hoping the no food bit wouldn't be a big deal.  Let's just say that if this was Allie, she would have been a bear from lack of food.  We arrived in Boston before 12:30, and waited for about 10 minutes before we were whisked into the preparation area.  The surgery was schedule for 2:45 and we were told right away that they were running behind.

This waiting area was fairly comfortable.  We had our own cubby.  Anna was snuggled up in a (hospital) bed and she had her own TV with access to the Disney channel.  This kid never once complained about hunger.  A few times she told us her tummy was growling and once, right before they brought her into surgery, she stated that she was hungry but there was no complaining.  None.  No whining, no crying, no fussing.


She had a very long wait.  They didn't come pick her up and wheel her to the operating area until 4:15 and then from there, we had an hour wait until she was brought into the operating room.  The hospital staff was fantastic.  Although there was a significant delay, they provided updates and apologized profusely.  It's surgery at a hospital.  We couldn't really get mad.  Anna had brought three buddies with her - Buttercup, Zebe and Zebe's mom, Mrs Gomez.  While waiting to go into the operating room, one of the nurses took Buttercup and gave her a hair net and mask and returned her to Anna wrapped in a warm blanket.



If your kid has undergone surgery, you know how emotionally heart wrenching it can be accompanying them into the operating room.  I kept my emotions in check by reminding myself that this was a quick, routine procedure.  There are parents who do this not knowing if they'll see their kid again.  Anna was given some happy juice and appeared inebriated.  She was relaxed and face planted into her pillow a few times.

Although the procedure itself was short, Anna was in the operating room for almost 90 minutes.  Her urologist emerged with good news.  He said that we had been doing a great job with the intermittent catheterization - there was no inflammation of the bladder which allowed him to proceed with the deflux injection.  It will take some months before tests can be run to determine if the procedure was successful but he was happy with how it went.

Anna was a mess in recovery.  They didn't get us back to her before she woke up and she kept focusing on that.  It had been 24 hours since she had eaten so I'm sure that didn't help matters.  In speaking of it now with her, she doesn't really remember what happened in recovery.  Here's an example:

Anna:  "I looooove yoouuuuu."

Me:  "I love you too, sweetie."

Anna:  "Okay, now shush."

Although that's not far from the real Anna.

She kept looking at the monitor clipped to her finger and asking what it was.  We would tell her it was a monitor.  Three minutes later, she would look at her finger.  "What IS this?"  "Buddy, it's a monitor."

Fingers crossed for success.  Anna has already told us that she will lock herself in the bathroom if she has to do that again.


MandyE (Twin Trials and Triumphs) said...

Bless her heart, and yours! I am thankful to hear everything went well. Fingers crossed for a quick recovery and a successful procedure!

Anonymous said...

Having Children's Hospital in our back yard has been such a blessing. My 7 year old has Celiac and we have been in and out of different departments more times than I care to count, but each trip has been filled with the little things, like hair nets on stuffed animals, that really help kids get through some yucky stuff. I hope this is the worst of it for Anna and she really is on the road to recovery! Thanks for the update.

Bernice said...

What a super cute Brave little Rock Star. Praying that she is having a speedy recovery, and the procedure will help her.
What a fantastic staff at the hospital, that always is such a help in time like that.
Thanks for sharing your pictures;)

Teej said...

She sounds like one tough cookie. Fingers crossed that it works for the long run.

Also, she has gorgeous eyes.

Lisa MH said...

Sweet little girl! I'm glad she came through the surgery okay--and that both of you did, too. I hope the procedure was a success and that she can have some smooth (health) sailing in the near future. I teared up reading this. Going with your daughter into an operating room like that must be heart-wrenching.

I have a question, too--how are the other girls when Anna has to have surgery?? I assume they're all insanely close to each other and it must be hard on them, too. Or, is it "old hat" to them at this point and they just treat it like a normal part of life without knowing the extent of the health concerns/what can happen?

Just the Tip said...

So glad to read about this. We have to decide which procedure next year for M if she still has reflux. She has been on macrodantin everyday since she was 14months old. If she misses it a day or two she is screaming that it burns when she pees. Her reflux was bilateral 4/3 so it is much better now but she is 4.5 and can't stay on the meds forever. I think we would try the deflux first too.

Wendy said...

So many hugs for you and sweet Anna. I hope everything works 100% <3 <3 <3