Today Danny, Gail, Avrianna and myself spent the day at CHOW. WOW what a day! First appt was xrays of spine and hips then off to chat with the results to the doc. Good news his scoliosis is stable, NO rod lengthening ..... for now. His bend is 35 degrees right now which is less then what it was when we brought him in for his first lengthening .... which that was 40 degree. He's GOOD!
The docs really hoped that I would stay on course with EVERY 6 months for growth, BUT the curve is stable and I'm not going to put him through a surgery that doesn't need to happen yet. So in another 6 months or so we'll come back for more xrays and see then.
Danny's hips look great. I finally got to see an image without the right hip.
The left looks perfect...the muscles are what are giving us some grief. Danny is majorly frog legged .... luckily that is the best position to be in to preserve the hip n socket "relationship". So frog legged he will be :)
Avrianna was being such a good trooper ..... this was really her first time spending the day with appts in CHOW. She did GREAT!
After ortho we were off the trache/vent clinic. We got to see dietary and there is some concerns with his weight and puffiness so we have dropped down his formula even more. YIKES!! Danny will now be getting ONLY 19 oz of formula with 11 oz of water A DAY! We'll see how that goes. ENT came in and the wonderful non allergic ear tubes that were put in this spring are already out on the right side. The side that is ALWAYS infected, ugh! BUT it looks great n healthy right now so ENT wants to watch it and see how it goes. My gut says we'll be putting ear tubes in soon. Pulm was next.
Then onto the pulmonolgy appt. After much consideration, labs, and xrays.......the decision is made that Danny should be on a ventilator, for right now only at night. Danny has healthy wonderful lungs BUT he is not ventilating properly, which means he's not taking big enough breathes. His CO2 & blood gas levels continue to creep upwhile we still need to increase his oxygen levels to keep his sats up. We are fighting against each other. Vent it is. UGH! His lungs won't inflate big enough on their own anymore, BUT not because of his lungs.....the belief is this it's all stemming from Neurological damage. AGAIN with that!! Danny has an EEG next week and then we'll be seeing Neurology next month so we'll have ALOT to talk about...I hope they pencil in alot of time for us cuz the Doc isn't leaving until I get some questions answered! Unfortunately we (the nurses and I) have noticed some progression with Danny's decline, very low heart rates, shallow breathing, and lack of breathing while sleeping so I'm hoping this vent gives Danny a "jump start" to thrive. As I know it's only a matter of time when he'll just forget and stop breathing....ugh I think I'm going to throw up. I know this is all nothing I haven't heard before FOR YEARS, but when reality is here, it's .............. well upsetting. I'm trying to stay positive and strong but the feeling of anger is taking over. WHY my sweet Lil Man?!?! How long will he fight?!?! I just want things to be boring for us, is that so bad......I'm all over the I want normal I just want stable, just for alil while, is that too much to ask. AND STOP THROWING THINGS AT MY SON, HE'S HAD ENOUGH! We've had ENOUGH! This too will become our new normal and it will be like everything else, no big deal. It's just having to make these decisions over n over n over n over n over..... well you get the picture.
It's amazing, like I've said before, how much you adapt and they way you think changes as you go. If someone would have told me Danny would be on a vent even 3 years ago I would have disagreed with them. Then I've met wonderful kids on a vent and they are "still there". Does that make sense? I always had this misconception that vent would take way "Danny". He wouldn't be the same. As long as Danny continues to fight then I will do EVERYTHING and ANYTHING to fight for him! Once Danny isn't Danny anymore then we'll have some major decisions to look at. Now that Danny is labeled "vent dependent" that changes a few things around here for the nurses so they are off to training and let the paperwork BEGIN.
After a long and draining day Danny is napping ~ if only I could explain this all to him so he knows why :( ....... I LOVE YOU SO MUCH !!