Home Again

Clayton's dental surgery took two hours longer than expected Friday.  That is the worst part.  When you know your child's procedure should be ending and yet you hear nothing.  You have no clue what is going on and you are just waiting in the nothingness.

Well, the nothingness ended and my baby was returned to me with a mouth resembling that of a botched plastic surgery job.

Poor bug.  The dentist ended up working on 21 teeth!  Insane.  So glad we came to TSRHC for this instead of Pensacola.  These people work on the mouth's of special needs kids all day, everyday.  They have the experience to know what's going on and the patience and dedication to fix it properly.  I doubt Pensacola would have been able to do it all at once.  I am also positive we would not have had funds out of pocket to pay for work on 21 teeth and wait for dental insurance to reimburse us as Pensacoka said the case would be.  So thank you God for our wonderful hospital in Dallas and all they do for us!  Thank you for their eagerness to help us and their accomodations and for their Crayola Care Financial Assistance that means we will never pay more than 1% of our total income (if anything) per year.  When the orthopedic surgeon in NYC referred us to Dr. Sucato at TSRHC, I was slightly offended.  I didn't fully understand why he wouldn't take Clayton as a patient.  But I trusted the journey and I am so glad I did.  This hospital is such an all-encompassing kind of blessing.  I think too often people feel like they have to settle when it comes to medical care.  They have to do what's easy or close or what they THINK will be the easiest financial solution.  That is a myth.  Do not sell yourself or your kid or anyone you love short.  The right path might be slightly more difficult, but I can tell you from experience it is worth it.  We deserve top notch medical care and we have the right to seek it out were we see fit.  Don't ever settle when it comes to medical care.  It is way to important.  Don't be scared of the financial aspect either.  We have paid more to Sacred Heart than to either TSRHC or Sloan-Kettering.  Who would have thought, right? (But yes, traveling costs and can be it's own strain)  But we love all three places.  But most importantly, God provides for you to follow the right path if it's meant to be.  That is our experience.  So please don't settle; and be scared of the unknown and unfamiliar if you need to be, but don't let it hold you back.  Have faith in the journey God is sending you on.

Back to Dallas...it started snowing while Clayton was in surgery and didn't stop until nearly nightfall.  And while we were suppose to be discharged Friday afternoon, with the weather the hospital let us stay inpatient an extra night.  Even my mom and nana stayed.  All four of us in one hospital room.  But we survived the night and monitored the weather trying to find just the right time to leave if and when it came.  

We all three agreed our best chance would be to leave Saturday morning after sunrise and the city had salted/sanded the roads overnight and before the icey rain they were predicting late Saturday morning..  Temps were still below freezing, so there was no real melting yet, but we packed up and headed out around 9 a.m. (I drove).  So glad we did because this came in right behind us...

It was slow moving for the first hour as we navigated the icey roads, and then smooth sailing.  We made it home!

The whole trip was a HUGE success.  It is a miracle that we made it there and back and managed to get everything done between the winter storms.  And then to get ALL his dental taken care of in one go is a God send and a HUGE weight off my shoulders.  We are checking off our lists: stent replacement, check; dental, check; check in with Sucato, check; cancer scans and port removal...almost (March).

The dental was crazy though.  We expected them to work on four teeth for sure maybe 6.  My largest guess would have been 10.  We never saw 21 coming.  Poor bug handled it in stride.  He was definitely mad at me when he woke up though.  He also has continued to need Tylenol since the procedure.  He noticeably doesn't feel good when it wears off.  Hopefully, Monday he will get to drink from his kanteen again.  Until then, we have to hydrate him with a syringe by mouth.  And he can only have soft foods until that time too, which means getting slightly creative.  The dentist showed us X-rays and pointed out the sure signs of radiation and chemo damage.  Clayton is even missing a permanent tooth behind a primary that didn't form.  We'll have more dental later no doubt. But for now, we're done.  You can see his swollen lips and a little bit of a stainless cap here...stainless caps are all on molars.

That's all for now...I'll talk about his back later.