This past Thursday Malia had yet another surgery. This surgery was suppose to involve severing the FAMM flap. It was supposed to be the final step in closing the fistula in the roof of her mouth. Unfortunately, the graft didn't take. About 10 days post surgery, Malia had a huge gob of dead tissue come out of her mouth. We could still see the hole. There was nothing that could be done until the surgery day that was already booked. So all we could do was wait and pray.
All week we had been dreading hearing that the graft would have to be redone. We had no idea what that would involve. Would it simply mean redoing the graft with the existing healthy tissue? Or would there be enough healthy tissue to redo the graft? Would it mean completely redoing the FAMM flap? Would she have to heal first before the graft could be redone? Would this add additional weeks or months to this procedure? Would Malia have to stay in the hospital overnight? So many unknowns.
Although we were stressed and disappointed that the graft wasn't successful, we soon saw there were many things to be grateful for!
We truly do have the best surgeon, anesthesiologist, and nurses!
Our surgeon was incredibly wise and didn't let Malia know that the previous graft didn't work. She personally came to take us down to surgery and chatted and joked with Malia, putting her at ease.
Our anesthesiologist was incredibly patient, taking time to listen to Malia's questions and comments. Malia wanted to know if he attended church. He said he did and then asked Malia if she did and where she attended. Her answer..."Yes! We go to the Galaxy Theatre!" Hahaha! That made me chuckle! Honestly! Who attends church at a theatre!?! Ummm...we do! He was rather puzzled, so yes, I did explain that our church service is at the Galaxy Theatre! Later that day, Malia explained that "I just wanted to know if he knew Jesus!" Love that girls heart!
The patient booked ahead of Malia was a no show, so she was taken straight to surgery after we were done at admitting. For those of you who spend hours in doctors' offices and hospitals, you know that not having to wait is an incredible treat!
As you know, this was Malia's third time in the hospital in 6 weeks. The first surgery was cancelled. The second surgery was incredibly painful. Malia has always been nervous about surgeries, but has been fairly calm as she is put to sleep. However, with each procedure, she is becoming more and more worried and agitated. Her behaviour (at home) prior to surgery is becoming more and more disruptive. We joked with Malia as we walked into the OR and she seemed ok. I knew she was afraid and nervous when she looked at the anesthesiologist and said, "You're tall! And creepy!" (He is tall, but not at all creepy! He has the most gentle eyes and great PR skills!) Thankfully, the entire room erupted in laughter! She was ok until we tried to put the mask on her face! She completely flipped out! She clung to me, with her face against my chest, sobbing. The sobs quickly turned to top of the lungs screaming. Our anesthesiologist quickly decided to administer the anesthetic via an IV. Malia screamed bloody murder the entire time...until she fell asleep...and somewhere in the screaming she managed to yell, "I HATE ALL OF YOU!!"
Thankfully, this wasn't my first time in the OR. It wasn't my first time trying to calm a nervous child. But it was my first time seeing my child so completely terrified and angry! I know I was shaking in the OR, but I managed to be mostly calm, talking to Malia, trying to sing to her, trying to calm her. In the end, all I could do was hold her. Thankfully, I was able to quit shaking half an hour after leaving the OR.
I suppose it may sound rather odd, but I am thankful that Malia is flipping out and screaming. It means she is trusting us more and more. It means she knows that it's ok to let us know just how afraid and angry she really is, instead of bottling it all up inside. When she bottles it up, it comes out sooner or later. It always comes out in some negative way. So I guess, I'd rather listen to her scream bloody murder for 5 minutes, than deal with behavioural issues for the next 3 weeks!
Fortunately, there was enough healthy tissue from the flap that the surgeon was able to use to redo the graft.
Fortunately, Malia has had very little pain and the pain she does have is easily managed with Tylenol. Malia's time in recovery was short. She was hilarious! She was a little loopy, making funny comments. Inspite of being a bit loopy, she still managed to tell her nurse about Jesus! She recited the verses we have been memorizing. Her nurse was completely in awe of Malia and kept saying she was so very glad to have met her. I think Malia made her day!
While Malia was in surgery, I met several wonderful people who were such an amazing encouragement to me. To have complete strangers voice their support, with understanding, really means the world to me! I will never forget how all 3 of these people got up to meet Malia as we were headed to the Pediatric Ward...how they blessed us with their words...wearing their hearts on their sleeves. I will forever remember the gentleman with tears in his eyes, squeezing my shoulder, not saying a word. All I could think is...God is here!!
Thankfully, we were able to go home that day. Sitting in a room with 3 sick toddlers is not fun! Between the 3 of them, someone was crying the majority of the time. Somehow sitting in the hospital for a day, seeing what other kids and parents endure, makes me realize how "little" we have to deal with. I think I'd go nuts if I had to spend more than 1 night in the hospital!
We couldn't be prouder of our little trooper! Here she is with her first attempt at a smile post surgery. Isn't she just the cutest!?!
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