What on earth happened?
Long over due and I apologize! What an unexpected set of events these 3 weeks have been. I have grown more gray hair and ability the react and think ubber fast on my feet. I have grown weary and leaned hard on God. Life is funny and challenging and unexpected some times, and that sums it up!
August 28, 2013- Tim and I arrived at 8:00 for his last open heart surgery, the Fontan procedure. We did the usual prep and then were told the first surgery had JUST gone into the OR so we would be delayed from 8:30 to 11:00. No problem, we watched some TV and waited. At 11 am, we were told we would be pushed back to 2pm??? Wow, this boy is thirsty and hungry. They allowed him some clear fluids and we were offered to spend the time in the playroom. No problem, we love to play!
At 1:30 Tim was given his "giggle juice" to go nigh-night and off he went to the OR, completely asleep.
I then met with the surgeon and discussed all the details of what would be done and any concerns he had that would prevent this operation from moving forward. Not to be dramatic, but, open heart surgery with a complex heart condition isn't easy peasy!
We discussed Tim's unique anatomy of his fragile heart and the "unknowns" were addressed. Tim has had 2 echocardiograms and 1 heart catheterization. He can not have an MRI due to a shunt that serves as his pulmonary artery and multiple surgical wires left in his sternum from his two previous heart surgeries. This MRI would have verified the exact location of Tim's anatomy. Dr. Gaynor knew the aorta and the shunt were very close to Tim's sternum and chest wall. He was not aware that Tim's body had so over produced scar tissue from the previous surgeries, that the Aorta was directly adhered to the sternum and the shunt was completely embedded in his chest wall. In opening the sternum bone, they cut bone, wires and pry open the bone. Nothing delicate about any of it. The fact that this entire OR team has seen this all before, they were ready for the unexpected and had Tim already prepped for an emergency by-pass of the heart, which puts Tim in the safest position to fix any problems.
Well that unexpected did happen. It is not certain if it was bone, wire or something else, but the aorta sustained a small hole. Tim was immediately put on by-pass while the bleeding and repair of the aorta was tended to. His vitals did not even waiver in the least. But that rapid by-pass and the amount of blood products given to replace the loss, left his surgeon with 2 choices:
press on with the Fontan
or wait and assess Tim for any neurological, heart or lung damage.
He consulted with the best minds here at CHOP and finally said..."If this were my son, I would wait and make sure before stressing his body even further". I am grateful that he views ever child he operates on as his own. Never hurts to be cautious and safe.
So, we unfortunately got caught by the holiday weekend and thus 6 more days we had not bargained for! Bottom line....Tim healed well and reluctantly, agreed to go back and "unzip" his chest zipper again!
Words can't convey getting unexpected news, with no support team to lean on and then seeing your child fight to stay alive. No words, nothing prepares you for it. He awoke combative, trying to pull everything out. He had no idea at this point, he was going to do this again in 5 more days.
He decided to drive himself to pre-op the second time. This time we were moving swiftly. He got the "giggle juice" and immediately grabbed me and wouldn't let go! He was fighting the sedation with everything he had in him!
Police escort
So hard to let go a second time
So grateful this time would be the last time he would have to climb back to health. So grateful my best friend flew out...just in case....and that "just in case" stayed away!
The Fontan was completed! We have had more bumpy days than smooth. Currently Tim is down 1 chest tube and 1 IV. So much better than 12 tubes/lines he had fresh off the table! He is battling pleural effusion right now....fluid in his chest cavity and lungs. Hoping each day brings more and more healing!
This was day two. I walked into his room and got this greeting. It is insane how happy this boy is all...the....time! 
Can barely stand up, tubes coming out of his chest and arms and he begs to go catch "bad guys"!!!!!!
By the way.... Life does go on even in the cardiac ICU!
Tonight was yet ANOTHER big event!
Tim had another surprise for me. As I walked in from grabbing a quick dinner in the cafeteria, He gives me this treasure.......
Tim's FIRST lost tooth!
After reviewing what this all means, he very strongly DOES NOT want the Tooth Fairy to take his tooth. He was even willing to go without the treasure(money), just so he doesn't have to part with it. Sooooo, we negotiated the terms.
No fairy taking his tooth, it will be given to Mommy.
In return, his treasure will be left under his hospital pillow.
Deal!
Apparently, his teeth will NOT be used to make any castle for her. Why? No idea?
Letting the Tooth Fairy know the terms!
But at this point, this Superman can call the shots! He's earned it and more!
CHEESE!