Getting A Better Picture

(getting ready for today's procedures)

Today was the day for Melia's Cardiac MRI and TEE at Children's Hospital so the doctors could get a better picture of her heart to make their final recommendations.

She started the day with a yummy "chicken broth in a bottle" breakfast and after 9:15 she started her fast.  I joined her in her fast inadvertently because our morning was a little chaotic (Ryan lost his car keys, Zac spilled a berry smoothie down his shirt before getting into the car, Hallie had a hair crisis and Jake was practicing spelling words).

Melia did remarkably well and was distracted fairly easily until Grammy picked us up and drove us to the hospital (remember Ryan's lost car keys).  Once we arrived we were greeted by the hospital dogs and a few friends that we happened to meet up with in the lobby.  Ryan arrived and we headed back to our room around 11:45.

At 12:30 we had confirmed her medical history and I had given consent for treatment.  She received a dose of "happy medicine" to help with the separation and she was wheeled away happily by 12:45.

The plan was that she would have the MRI then the TEE with her Cardiologist and finally she was to get her second round of immunizations while under sedation. Then she would return to us around 3:30ish.  I ran to get a bite to eat, Ryan went to get a new phone (he had dropped it and cracked the screen the night before) and then we waited.

Her Cardiologist came in to give us the report at little after 3:45.  He did not find anything surprising and suspects that after he reviews the MRI and discusses it with the group in Omaha and del Nido in Boston that they will continue to recommend a PA Banding surgery to prepare her heart for a double switch in the future.  We discussed who, where, types of surgical approaches and her condition.  Once again, we did not feel rushed while talking with him and appreciated his experienced opinion.  They will call next Monday after Grand Rounds with the final verdict.  If, indeed they do recommend surgery then we will also be discussing treatment plans with local and national surgeons to find the best place for her to have this intervention.  Her final diagnosis is:  Atrial Situs Inversus with D-looping of the heart and D transposition of the Great Vessels in Dextrocardia which is the equivalent of Ventricular Inversion with L Transposition of Congenitally Corrected Transposition with a small VSD and ASD.

We are grateful that there seems to be no hurry for us to make these decisions.  We are also thankful for anyone willing to pray for us that God would impart wisdom as we proceed.

Melia returned to me around 4:30, sobbing!  I quickly took her into my arms and they told me they had forgotten to give her the shots while she was under sedation so they decided to give them while she was in a strange recovery room with strange people all around her as she woke up from anesthesia!  I was quite upset.  My goal was to lessen her trauma and anxiety related to health care but I'm sure that experience will actually heighten her fear.  What was done was done, but I was not happy.  After about 15 minutes I was able to calm her down and comfort her.  She sat on my lap for about an hour and then it was time for us to leave.  Ryan picked us up with the big kids and we headed home.

She threw up once tonight, but then was dancing and giggling like nothing happened today.  I hope she rests well tonight.  I adore that precious child so very much and it pains me to see her experience any discomfort.  I think that is what is making the decision to proceed with surgery so difficult.  If I had an ill appearing child that was suffering, surgery would be a welcome intervention, but it is so hard to choose pain for my "healthy" child in hopes that it will prolong her life and give her a greater quality of life.  Because her diagnosis is so rare (less than .5% of all Congenital Heart Disease) the treatment plan is largely based on theoretical outcomes, not proven outcomes.  We know that without intervention she could live a "normal" life to the age of 40 or 50, but it is presumably more likely that she would suffer from some amount of heart failure before that time, maybe even in her youth.  Surgeons hope that a double switch done early in life will prevent failure, but they only got good at the surgery in the 90's, so there are not many (if any) 30-40 year olds that had the surgery and can show the world that it did improve quality and quantity of life.  The other problem is that once the heart starts to fail you can't really "get back" what you loose, so intervention before failure (ventricular or valvular) seems optimal.

These are the decisions we are faced with in the near future.  We are not feeling desperate or anxious, but we would really appreciate prayers for wise decision making, peace and positive, life-sustaining and life-enhancing outcomes for our daughter with whatever we decide to do.  One thing I know...God is good and just and loves her and loves us.  We can rest in that blessed assurance!

(A glimpse of our sweet little girl, babbling away!)