Day Surgery = Long Day!

Tuesday was a very long day for our family.  We had to be at Children's in St. Paul at 6:15 in the morning for Lucy's pre-op before her procedures started at 7:45.  I was able to go with her into the Operating Room and hold her while she had the anesthesia administered.  It was uncomfortable to know that she was going under while I was there, but I was glad to be with her right before she fell asleep.  Everything last for about 4 1/2 hours total and we were home by 4 pm.

She's had a bit of a cold for the past week, so we weren't sure they would be able to do all of the tests, but she was a champ (as always!) and handled everything very well.  All of the staff told us what a precious daughter we have.

Reading a recipe to grandma

Here is a run-down of what she had done:

 - ENT -Laryngoscopy and bronchoscopy, in which they scoped her trachea and vocal chord area to get a better understanding of what the anatomy looks like and take some baseline pictures.  The severity of her tracheamalacia was confirmed and we were able to see pictures of what her windpipe looks like when it is almost closed - kind of amazing she doesn't have more issues with her breathing when you see that picture!  We will follow-up with the doctors in the next few weeks to understand next steps.

 - GI - Performed an endoscopy, in which they scoped her esophagus to take a look at her surgical site.  They confirmed that she has an esophageal stricture - or a narrowing of her esophagus.  This is not unheard of for babies with TEF repairs, however, hers looked to be quite narrow - the doctor used "pinpoint" to describe how narrow it was.  She was very surprised that Lucy had been able to handle any baby food at all, as she believes that it would be very difficult to pass through that narrow of an opening - but we all know that Lucy is an amazing, determined little girl that has been surprising us for months!  She will have another swallow study in a few weeks to understand how her system works when solid foods are handled and she will likely need to have her esophagus dilated over a series of procedures so that it is wide enough to handle food more comfortably.  Oh, and she had a new feeding tube button put in...I won't go into the saga about the button, but lets just say it definitely did NOT fix the leaking problems.  More on that in a future post, as I'm sure it will continue to be a challenge for us.

 - MRI of her brain and full spinal column.  We will meet with her neruosurgeon next week to review the images

 - Adjustment of her shunt.  After MRIs, the type of shunt that Lucy has needs to be reprogrammed to the correct level because of the magnetism in the MRI machines.  Typically, it is set at 1.5, but after the MRI, it was at 2.5.  Her shunt is super easy to reprogram - it just requires an medical staff member to put up a special magnet and it adjusts itself internally!  It's amazing technology and makes having necessary tests like MRI's easier to handle.

We are encouraged that we are another step closer to understanding Lucy's eating challenges, but discouraged that she will need to have further intervention to get everything working correctly.  This trip reminded us of the long road ahead of us as we continue to address Lucy's physical needs.  To be with her on a daily basis, it's so hard to believe she'd got all this other stuff going on.

Reading and Relaxing with grandpa

Oh, and in case you are wondering, I continue to talk with the insurance company at least daily.  UGH!  I am reminded that this journey is also about waiting on God and trusting His plan for our lives.   I thank him daily for renewing our strength.

Isaiah 40:31
But those who wait on the LORD shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.