Heart, brain and spine MRI's happening now

My sweet boy is under and in the process of his 3 MRIs this morning. For the heart and the spine they need his lungs to be still so they are using a device to do the breathing for him. Scary. I didn't learn this until this morning just before the IV. 

Please send positive thoughts his way. 

Again, I witnessed him go under. I asked them not to let me feel him or see him but it happened to fast. Before I turned my head his eyes were rolling back into his head and he dropped as the nurse was at the ready and caught the weight of his head to the pillow. Something a mother should never witness.
The procedure Ian is in the middle of is a proactive study of the brain, heart and spine. It was scheduled and it's been a long time coming to happen. It's not your typical study so takes a while to get it all together. The brain is being looked at as an M-cm protocol. Making sure there is still adequate room for his much larger than typical brain within his skull. He also has a VP Shunt that could use a baseline look. And it's probably to see how the scaring from the brain bleeds he had as an infant are working themselves out.

Heart wise, the dilation of his Aeortic root has been getting larger. Of course his growth has been quite rapid in the last year and a half so that could have an affect on this. And while looking at his growth relative to the dilation, it might not be as scary as just relating it to the last ECHO but still need to have a look. He's also never had smooth heart rates. Continuous PVCs, low rates when sleeping, lots of strange things that he seems to show no other symptoms of so not much to do now except really follow it. And look at additional meds that might help control the pressure so as to not cause a burst. Unfortunately those meds also mask the symptoms of Hypoglycemia which is another major issue so not really an option. His cardiologist and I are exploring maintenance options for this but she really wants to see what's going on to have a solid baseline to go from.
And finally the spine. As some of you know, this years' diagnosis was Scoliosis. Confirmed in April, reviewed in October and shown to worsen dramatically. His back doctor wants to see what's happening here, in case there is extra fluid build up in the spinal column causing issue. Another issue could be his rapid growth due to finally getting his Growth Hormone up to his potential with his nightly shots. This was not done for growth but due to low GH is causing low sugars and Hypoglycemic events which was 2013's diagnosis. And caused an event that was definitely one of the 3 scariest episodes of his life. Another reason I'm anxious to see the spine is that when we did the lower lumbar to look for a tethered cord (another one of many M-cm connections) they saw extra fluid at the base. Which supposedly was not a concern at the time. But this year he's also been exhibiting a bump on his lower back which has caused me concern watching it get worse. His neurosurgeon tossed it off to "Oh that just Spina Bifida. 20% of the population has it." but there is nothing typical about this boy so I need to know how it might be affecting him. Not like he can just say, "Mom my legs feel tingly".

So there it is. This is why we found ourselves at the tray connected to the massive MRI machine about to roll him in for his 3 hour study. And why I should have turned my head and just held that sweet hand that I kissed about 50 times before leaving his side.

Luckily he just missed getting all of the colds that have been going around. He literally started coughing and sneezing at 5:30 this morning when Mike woke him to head to the hospital. There's something about a scheduled procedure, of any kind, that a causes a child to seek out germs 　
The possibility of him getting sick and having to cancel, along with the anxiety of the procedure, has been making me more than a bit out of sorts last couple days. Anyone who has, themselves or along with a loved one, gone through the mental preparation for any kind of "procedure" knows this process. Taking the time to build up the courage to push through it with certainty and then they get sick. It's devastating. At the same time the relief of not having to go through it is a different kind of weight lifted, but just temporarily which almost makes the inevitable even worse for all.

There's something about writing that helps me cope with all that I encounter. Our family does have it so much better than so many and, I try to be aware and appreciate that daily. At the same time, everyone deals with the trials and tribulations of life, no matter who you are and what they might be, they are relative to you. For me, it helps to type it out. Literally as horrible things are playing out in my life, relative to my sweet Ian at least, I'm anxious to get to a keyboard to relieve myself of the experience, if only at the very top level. I wish he was gifted with that kind of outlet. We will see how he is able to cope as he is more able. Right now, his coping method is to beam his sunny smile and share his love with the world. Always helps to have an electronic device handy with one of his favorite shows.

Now time to walk back to the hospital. Have downloaded, grabbed a tea and am prepped to cheerlead for the experience of the next 24 hours of stay. Thank goodness for music, books and iPads. And for my sweet boys' loving spirit and resilience to all of the trauma he's experienced throughout his life thus far.