After my previous post, I received a lot of messages, comments and emails about support for our family and the kind acts that they were taking on for Tehilla. It not only warmed our hearts, but it spread a blanket of calmness over us. It's an amazing feeling when hundreds of people let you know that they have got your back and they are standing by your side. We can't possibly express enough how much this all means to us.
We are lucky. We are blessed beyond measure. And we feel very positive going into this surgery.
Tehilla is not only stable but doing incredibly well. Those are the most ideal conditions to go into a surgery with. Our Tehilla is a fighter and we know that she will be the incredible heart warrior princess that she is.
There is an aspect of the surgery that I have not yet explained. It is very important that I explain it now to you all, because you can personally play a big role in helping Tehilla. This surgery has another aspect to it, that has not been a factor in her other surgeries.
Tehilla is older. She will be nearly 3 when she has the surgery. Previously, when Tehilla underwent surgery, she was too little to be aware and cognizant of what was happening to her. When she woke up and was still intubated or had chest tubes in, it didn't have any real effect on her.
There is an aspect of psychological trauma that occurs after the Fontan surgery. She will be woken up from anesthesia soon after surgery. She will be heavily sedated for the first parts, but soon after, she will be weaned down from sedation and pain medication. However, she will still have many tubes, IVs, and machinery hooked up to her. A big aspect of the recovery is that Tehilla will be uncharacteristically angry and distressed.
It is OUR job to help her through this difficult period. I say "our" because you can do a great deal to help. What we have seen that has helped other heart kids overcome this very traumatic experience is pushing back with decorations for the hospital room, toys, crafts, treats- Anything to raise her spirits and distract her from her situation.
You and your kids can draw Tehilla pictures or get well cards that we will hang up all over the walls. You can either scan them in and email them to me and I will print them out, or you can send them via mail. You can send us decorations. You can send us little treats and toys to give Tehilla frequently. Nothing extravagant, but any little part that you would like to play will help Tehilla directly. I would love to cover her hospital room beyond recognition.
Tehilla loves pink, purple and yellow. She loves Hello Kitty, Peppa Pig and Princesses. Anything that sparkles and shines brings a smile to her face.
You can email us at: firstname.lastname@example.org. You can send us pictures or cards. If you would like to mail something to Tehilla, email us and we will provide you with our address.