not always la-la land . . .

{violent sleep}

{a difficult day for our boy}

Once again at Seattle Children's for yet another MRI. This time sedated.

I was told it was going to be a long MRI, which included the BRAIN and T SPINE. Since Jack could easily be in there for over an hour for this one, Dr. S. decided it would be too difficult for a child to stay still, I was relieved... and not, as I quickly got nervous about the anesthesia.

Well, I wish I could say it was uneventful but it wasn't. Jack was his sleepy self when we checked in so I was really hoping when they rolled him back there he would easily drift off into la-la land without any struggle.

Unfortunately Jack quickly woke up from his stroller once he started to breathe in the gas. He screamed and kicked, taking 3 of us to hold him down, not to mention the Anesthesiologist that was trying desperately to get him to breathe deep enough to put him under. As I walked back to the recovery room, I just knew this was NOT a good sign.

About 90 minutes later they brought him in. As he slowly woke up, he begun to struggle once he felt the tongue depresser in his throat... then he awoke very combative, kicking, screaming, pulling his O2 off and trying to yank his IV out, needing to be restrained.

They call this "Emergence Delirium"  Its described as a dissociated state of consciousness in which the child is irritable, uncompromising, uncooperative, incoherent, and inconsolably crying, moaning, kicking, or thrashing. Apparently its seen much more in younger children, from 2-5 years old. But for those of you that's witnessed it yourself, you know exactly how it looks!

I was worried this was going to happen. It seems 8 out of 10 times, this is what we'll get as Jack recovers from anesthesia. He was given the Sevoflorine/Propofol combo today, apparently this is the same combo that worked nicely last year for another procedure, besides having a tough time waking up, he awoke peacefully.  BUT I just learned this today, as I didn't even know he had the Propofol, thinking he wasn't allowed to have it at all.

Propofol is one of the drugs that's on the No-No list for Mito, its said to be Mito Toxic. Dr. S. didn't allow Jack to have it with his last MRI, in 2009. So Im not sure why it was used in 2010.   I did ask the Anesthesia Nurse on the phone about it yesterday and she told me the Anesthesiologist that works with the Mito kids here at Children's felt comfortable with it since Jacks records showed he had done well with this combo before, and since he has a known poor reaction to the 2 inhalant type, this seemed to be the best choice. Ive read its safe for our kids for short procedures, we know every child is different and theres Drs that have a differing opinion on the Propofol with Mito.

In any case, I would love to know why he did so well with it last year and not today, maybe Jack will never be consistent with Anesthesia. All I know for certain is, we didn't see this when he was a baby/toddler when he was being seen at Mary Bridge Children's. But I never saw them use inhalants on him, only the propofol alone. I just remember him being put out with the syringe only. So it could be the inhalants causing all this.

I sure wish we could find the right mix though because its pretty difficult to watch him go through that. AND its one thing when he was little and easier to hold but now at 8, hes very difficult to manage!

One piece of advice Ive learned, DO NOT try to talk to your child when hes in this state, its like trying to talk to a child having a night terror, it WONT WORK! They just get more agitated. I basically had to force Jack into his stroller and got out of there as quickly as I could, him screaming the whole way! Yep, I got a lot of stares!

NOW Jack is being sedated again for his upcoming Dental surgery next month, so I really need to discuss this more with Dr. S. He sees him on the 24th for his 6 month Mito follow up. I hope he can tell me once and for all if this combo is safe for him. Maybe he will know what we can try next because I'm definitely not looking forward to a repeat of today!

Please pray Jacks BRAIN and SPINE look good. He's never had an abnormal Brain scan, only an abnormal MRS, showing lactate peaks.

MRI's scare me... its one of the few tests that can show real progression of this disease. Ill be devastated if thats what we see this time... Im just not ready to actually physically see it on a scan... sigh. Where is my dear friend, denial...