"Strength does not come from physical capacity. It comes from an indomitable will" ~ Ghandi

Shawn and I are home from biopsy and 12 hour IVig infusion. Shawn's results are an awesome 1a, and yes, we would always love a ZERO....a 1a is perfect after the scare we had in late April.

Shawn did incredible. There wasn't a single problem or worry through the day of biopsy and infusion. We were able to see our friends, the Baderman's, who we lived with in the Ronald McDonald House in 2006. We didn't get a room at the Ronald Mcdonald House this trip, we missed seeing everyone there, but we knew this was going to be a very, quick trip.

When we flew in Sunday, we had plans to meet up with our friends, Alex and Andrea (Alex is post-heart transplant, now in college) for lunch on Monday, and learned that our friend, Sid was here for a check up as well. (We lived with Sid for a looong time in the Ronald McDonald House). Because of the pain I am in thanks to my back (long story) I have been grinding and clenching my teeth...I have been breaking my molars and learned that long flight, altitude, broken spine, broken molars are bad...very, very bad. We weren't able to meet up with all of them....which I now regret more than anything.

After lunch, Sid's doctors found on his labs that his magnesium was low, he had been having issues with low mag, even though he was taking supplements. (Shawn still takes 6 pills of magnesium a day). Sid was sent for an IV and an infusion of magnesium. When the infusion started, he had a seizure. The seizure was treated, however, Sid has been having some problems lately, so to be cautious, the team decided to keep him overnight for observation. He was up until midnight, talking on Facebook, IM'ing his friends. Around 2 am, he told his mom, Peggy that he felt sick, and knew he was about to vomit, after throwing up, Sid collapsed and went into cardiac arrest (coded). It took over 25 minutes to get a heart beat...he was then moved to another room, where he coded again. The first time I saw him, was about 3 hours after he coded the second time, while Shawn was in biopsy. No one knows why this happened, what caused it, etc. While Shawn was in the Short Stay Unit for the 12 hour IVig infusion, Sid underwent surgery to put him on ECMO, which is a heart / lung machine.

I was lucky enough to be able to go into see him in the North ICU (because Sid is now 19, he has been transitioned to Stanford) before Shawn and I flew home yesterday. At that time, the plan was to stop sedation to see when he will wake up. they will do a series of tests, including an EEG to look at brain activity, there is also serious concern that due to hemorrhaging internally, the ECMO may need to be stopped. Things are dire to say the very least. However, we have seen miracles happen. They do happen....and even when you think it is impossible....it's not. Today is a big day for our boy, Sid.

Now that we are home in Alaska with Shawn doing well, it is time to fix my back. I have to have my spine fused. I haven't been without pain for so long..I can't even imagine it. Chronic, non-stop pain changes you. It does. I am a tough broad, but this is indescribable. Every move I make, everything I do, now even breathing ~ BREATHING ~ is a challenge and will gasp for air, because I hold my breathe all the time from the pain. Without going on and on, complaining, etc. I will say that my big surgery is next Wednesday, and I need to get up and going for one of my two pre-op appointments today. This trip with Shawn, was just about impossible for me. But I grit my teeth (literally) and everything went well...other than being heart sick for our Sid. On one hand, I am very excited at the thought of fixing my back, on the other, I am scared of the recovery and the possibility that the surgery may not work. I hate to think what will happen then.....we'll jump off that bridge then, I guess.

I am off to Orthopedic Physicians of Anchorage, Shawn and Haley are in Shawn's room giggling a little too much ~ pretty sure there is some craziness going on in there, Amanda is down in her room with her broken paw, G is at work, our Sam is with her friend, Alex in Georgia...it's a little cloudy outside here in Eagle River....but all in all, a beautiful day, considering that yesterday, I walked OUT of the ICU with my son, drove to the airport, and flew home. Bad back, huge bills, mind numbing pain, etc, etc. are a cake walk compared to waiting to hear if they wil turn your son's life support off in the next 12 hours.

If that doesn't guilt you into going out and having a good day or appreciating what you have...nothing will =)