Surgery Postponed - What's Next for Joy

This girl is a character. And for all her developmental delays, Joy doesn't miss a thing. Not one little boy gets away with anything when she is around. She is becoming a professional tattle-teller but let's face the facts, it's three extremely active boys against one little girl...she definitely holds her own! She is learning in leaps and bounds. Just this week, we had a language explosion and she tells me everything whether I understand what she is saying or not. I admire her tenacity!

Joy rarely complains about her oxygen. 

Other than a few bloody noses, we have settled into a decent routine.

Joy was scheduled for surgery on January 17th with an ENT and her Pulmonologist. On January 14th, I spent the morning (translate a few hours) going back and forth with the hospital arranging everything with her medicine schedule, her language issues, etc. I had already pulled a few strings and gotten our favorite anesthesiologist on board.

Is this not the cutest fountain head you have ever seen? We are in between short hair and long hair and recently found these cute flower elastics that she loves so we are back to top knots! 

I also received some paperwork in the mail that day, three days before surgery, that said Joy was supposed to be off aspirin and vitamins for 10 days prior to surgery. I had spoken to the ENT office, pulmonology, and cardiology practically on a weekly basis since December and to my knowledge, no one ever mentioned this not-so-minor detail.  I figured it wasn't that big of a deal, because she is on a very teeny tiny dose of aspirin.

Joy was a little tentative and overwhelmed on her first visit to a children's museum.

When the medical assistant called me with the official surgery time for Thursday, I mentioned just receiving the paperwork and the aspirin issue. Everything fell apart from there. SURGERY CANCELLED for that Thursday. We certainly don't want Joy to bleed to death if they go ahead with a tonsillectomy. She MUST be off aspirin and vitamins for 10 days prior.

Amazingly, Joy stuck with the paper mache project for about half an hour.  

I had been feeling very anxious about this particular surgery for some odd reason. More so than the heart caths where they thread a wire up my kid's tiny arteries and tickle their hearts. After a big ugly cry and some wise counsel from a friend, I realized that God had a bigger plan and there must be a reason for the postponement of Joy's surgery. We are very ready to resolve some of these other worrisome health issues which made the push back a hard pill to swallow.

But God's plan is always best. I was reminded of the "cracker incident" in Boston where her cath was cancelled until the next day because she got a cracker in her mouth. Same as then, after the initial disappointment over the change, I felt a sweet relief. Someday I will learn it is always best to let God be in control.

New surgery scheduled for February 21st. We also had a cardiologist appointment this week which showed her pressure gradient IMPROVING! Joy will continue on her medicine and oxygen regimen until summer when we will head back to the cath lab to check her pressures. 

We are headed in the right direction!