Just when you think....

that you have been slapped around by the Great Spirit in the Sky enough for one week?? Just wait, you ain't seen nothing yet ....

You know how in my blog intro I promise you 'the Good, the Bad and the Ugly'?? Well, you've had glimpses of The Good (just look at those little faces), you've read a bit about The Bad, and now most definitely, it is time for THE UGLY.

This past Sunday, I finally started to feel halfway human again. And of course after I spent about an hour or so bragging to my parents about how well (relatively speaking, as they know what it used to be like) the boys, especially Salamander, had been doing (yes, we had the emotional upheavals last week as Salamander was resuming Listening Therapy/Occupational Therapy through Project CHILLD, and while it is always hard to see some negative issues come back temporarily that you thought had disappeared, overall Salamander has been doing well), that perverse Great Spirit or All-Knowing-Being 'upstairs' decided that it was time to teach me another lesson..

So over the course of Sunday afternoon, Salamander's general state of being started to detoriate somewhat. The alarm bells should have gone off in my head - he had gone back to his periodic 'I'm am NOT eating anything that moo'ed, baah'ed, clucked or gobbled in a past life' (aka total animal protein avoidance mode) about a week prior with the associated weight loss, and that is usually a signal for 'things to come'. Then over the course of the weekend, he had gotten constipated, and constipation usually will put him in a funk. So Mommy decided to help Mother Nature along a little bit.

I don't really know (yet) what the H#LL happened - whether I was a bit too aggressive in helping Mother Nature along, or whether coincidentally (although I don't believe in coincidence anymore with anything that is going on with Salamander..) he went into a major detox/metabolic crisis, but things got ugly. Un Sunday eve, Salamander did 'go' - three times within as many hours (unusual for him), and very large amounts too (and I'll leave it at that), so the poor kiddo was definitely plugged up.

I had however not anticipated the events that were to take place the next morning. When I walked into Salamander's room on Monday morning to get him up and ready for school, I was greeted by a child with 101F Fever, who looked like a Vampire in Training (stark white face, red swollen eyes, bright red puffy lips, spaced out look in the eyes). So obviously he wasn't going to go anywhere that day. So I did my usual mad scramble for when I need to stay home from work with a sick child, and took it from there. Salamander spent most of the day feeling completely miserable (he kind of hung in a chair, didn't want to talk, didn't want to play, all he wanted to do was watch TV), and his fever just wouldn't come down (I don't like to suppress fevers, unless we go over 103 F). Even an Epsom Salt bath didn't really help him. And over the course of the day, his eyes and face became more swollen. I took some pictures, just so I can show his docs what he looked like, as I am worried about what happened here, and none of my usual 'tricks' seemed to help him much this time.

We seem to go through a cycle like this every 2 - 3 months or so, and I just don't know whether we're dealing with detox (a good thing) or some type of metabolic crisis (not good). I've had concerns regarding Salamander and the potential for a metabolic/mitrochondrial disorder for a long time, and considering this latest event, I need to get more serious about ferreting out what is going on (some of his labs are definitely fluky, but not fluky 'enough' to yell metabolic or mitochondrial disorder - he does have a lot of the 'soft signs' though). What happens is that during his 'good' phases, I put any investigations on the backburner (only so many hours in the day...) and I kinda forget about my concerns, and then WHAMMO, we're in the next episode. I did call the test laboratories where we do most of Salamander's testing to get a few extra test kits, as I want to be prepared to collect samples of whatever I can collect when the next episode hits (as this WILL happen again..).

Finally, late on Monday night, I ran out to the CVS to get activated charcoal (yes, I know, I should have added THAT to my toolkit a long time ago) and I must say that within 35 minutes of administering the first dose, Salamander was 'on his way back' and he continued to improve with each subsequent dose.

He had a good night of sleep, but still ran a 100 F fever on Tuesday morning when he woke up, so I kept him home from school that day as well. He continued to improve throughout the day (still looked pretty awful), but over the course of Tuesday, he developed a cough that became progressively worse into the evening (was his immune system 'down' and therefore he caught a bug? Fluky, crazy histamine response? Haven't figured it all out yet...). I put him back on Albuteral to help with the cough (no drainage from sinuses though - just a really dry, nervous, agitated type of cough). He continued to improve over the course of Wednesday, but the cough is still there. The Albuteral is helping a bit, so we'll just have to ride this one out.

Needless to say, I had missed quite a bit of work and ended up, once again, way behind on my projects. On Wednesday, I ended up having to leave early as well to take Salamander to his next Listening Therapy/OT appointment, but overall I felt that I was slowly regaining some sense of 'control' and was actually looking forward to being able to spend a whole day at work on Thursday (to make some solid progress on one of my projects and to clean-up the mess that I had left for my poor co-workers and my incredibly patient boss to deal with).

Such naivete....

At around 5.15. pm, I received a call on my cell phone (while I was working with Salamander during the Listening Therapy session) from a lady with a Spanish accent, who informed me that DH had had another one of his migraines followed by neurological impairments episodes and that he had been carted off to a hospital somewhere in Puerto Rico. I won't get into all the gory details here, but suffice to say that this is the 4th such episode in about 7 or 8 months and that it is now more than time to get serious about investigating what is causing this. So I had a 'chat' with DH in which I strongly 'encouraged' him to finally have all of this checked out (you get my drift here...).
Fact is that I am stretched awfully thin already with managing the increasingly complex situations for the boys, and I just cannot take on management of yet another complex medical case (and stay somewhat sane in the process. Hey, quiet down there in the peanut gallery).

DH made it back home yesterday morning, and I must say, he has stepped up to the plate and got the ball rolling. I have no idea yet where this particular 'quest for a medical answer' is going to lead us, I have my suspicions which I won't voice just yet. We'll just have to see what, if any, medical answers there are and then take it from there. Needless to say that I think this is way more serious than 'just a migraine'.

So my Thursday work schedule got pretty messed up too. A work buddy of mine even asked me (after I had spilled my guts) 1) why I did even bother to come to work (wellll ya' know, I do kinda really need this job..), and 2) how come I still had a sense of humor after all this shit (well, I am to damn numb to cry, I can't run screaming for the hills, and falling apart is not exactly an option either, so there you go..). I will have to work most of the weekend, just to catch up a bit (which I will do from home, no way I am leaving DH without adult supervision at this point). Sigh.

I will admit that I had some really, really, really bad moments on Wednesday night (especially as my mind was going down the 'what if DH has this next episode while he is driving or when medical help is not readily available). Thank God that I have a perverse sense of humor that will kick in full gear under the most intense of circumstances (I'm the kind of person who'd be cracking jokes about the guillotine as my head is about to lopped off..) and Thank God that I have found an awesome group of cyberspace buddies that I can contact to scream, rave and rant at (Thanks gals for being there for me, I am convinced it kept me from having to take a one-way trip to the Nut House).

Thank God It's Friday. I have a shitload of stuff to get done (work and personal wise), but I'll make my list tomorrow morning and just work my way down and see how far I get. I really need time next week to get prepared for my and the boys' entry into a clinical study that is being conducted by Dr. Jacqueline McCandless to study the benefits of TransDermal Low Dose Naltrexone in're-setting' screwed up immune systems (will try to blog more about that too, within limits of course); it involves the completion of reams of paperwork (of course), as well as blood work (that'll be fun!!), but I also have this large work project that I MUST get done. Business as usual!!

But can you say ... cough.. TRAINWRECK?????