I actually...for the first time...sat and thought about the title of this post. And it was my first thought ... and my last one. I have no other way to say it. It was an emotional day.
The weight that we feel regarding Azlan's medical condition is pretty heavy. This is our son. Our son that has battled an infection in his head since April 2012. Doctors that are disagreeing. The specialists say it's definitely a classic infection with a bandaid on it...(bandaid = antibiotics). We have just removed the bandaid. Specialists want the implant removed. So do we. Yet the surgeon says NO WAY. Seems to be some good old fashioned pride getting in the way. He must have told me 4 times yesterday that "in 12 years I've never removed and implant". I was quick to assure him I don't blame or fault him one bit...but I absolutely will if he fails to remove it and an infection goes crazy in my child's head.
He was so adamant. NO. WAY. After prescribing antibiotics and even seeing him admitted in the hospital and sending him home with a PICC line of antibiotics last year...he now changes his mind that it's not infection at all.
My stomach is in knots. It's amazing how you can have peace through some crazy times in your life...but right now...we have no other answers. Other than take photos of his head twice a day to log any changes whatsoever. And Azlan...with a very high pain tolerance...is in pain. The site looks great at the moment. The skin is all peeling every which way which is what it does after it's been inflamed and it was last week. But he's hurting. And we have no peace about what we've just done.
On top of that...if it does go crazy with infection, his surgeon won't remove it until things are too serious for our comfort. A CAT scan of his skull showing infection...??? This is skin deep. Are we really willing to let it go that far...?
Ok so this has been gnawing at my heart all day and ... is not going away.
But today was a good day. Around work and school and life...tonight I made the kids a v day cake...and Daddy bought them all the coolest piggy banks ever and cookies from the bakery. Yes...piggy banks. They've all been needing them...and we saw some really fun ones that we were able to pick to their personalities and they were SOO excited.
Taizi went to bed stuffed til he couldn't look at his food anymore. This is clearly the max we can get into him. His liquid now being such a thick heavy liquid, he can only handle so much.
The amazing news is while we started OPERATION NO MORE BOTTLE just Monday...we are there. 100% there. Bottle is gone. He is totally on a sippy cup and spoon fed. And the same amount of intake. So amazing it gives me chills. We have worked hard but have made so much progress.
The sippy is one of those ones I actually hated for our bio kids its the one with the soft spout that you have to bite and suck at the same time. Well the other kids could never figure it out. Taizi bites and it comes pouring into his mouth so it's so perfect.
We even found out that Hershey's chocolate syrup has 50 calories per tablespoon so that goes into each bottle of pediasure 1.5 and adds 150 calories a day. I know. Disgusting that this is what we are pumping into him....but try finding high calorie foods that a very very very particular child will swallow. The nutritionist loves it. She was telling me mayo and butter...and he won't take it. But this he sure will.
It's going to be interesting to chart the growth...and see what happens.
Tomorrow morning we head to Seattle. Again. For dental appts. While it honestly feels silly to go all the way to Seattle for dental...it's a prerequisite for his heart procedure on the 19th. So...off we go.
Today the phone range 4 times from Seattle Children's with Zihao's referrals starting to come in. Oh yes. :)
The house is quiet. And my heart is not. Oh please God...please give us wisdom with Azlan.