Tuesday, May 10, 2011

Blistless In California

Blistless or B-listless

When a Blogger becomes listless or apathetic about posting. It is also indicative of what will happen to the Blogger's mailing list.

Yes, it would appear that this affliction has struck Mama Deb.  And my apologies, as the definition tells me that I have now likely passed on said affliction to you poor followers.  It's been slowly making its way into my life over the past year, but has really taken hold over the past couple of months.  I'm fairly certain my desire to not sound like a pathetic, skeptical, pessimistic, overly dramatic, loon may have a thing or two to do with it. (Though the ounce of optimistic, rational calm I have left keeps telling my other self that I'm strong enough, good enough, and doggone it, people like me!)  

I had good intentions of telling you just how fabulous our recent trip to Hawaii was and then it all sort of went to shit starting the night we got home and I was wallowing in my own sorrows too much to tell you something that might make you think I had been happy for Six.Whole.Days.  You know, cuz I got a rep to protect.

So I'll start with the crap and then end it on the high notes of our trip.  Sound good?  

We got home on a Thursday night around 11 pm.  Naturally we were all sorts of screwed up on our body clocks, so it was tough to wind down and go to bed.  B went with very little fight, but M started having this awful indigestion/burping the second we walked through our front door.  Interestingly, this indigestion had started a couple of weeks prior, but had magically disappeared during our vacation.  But we'll speculate more on that later...
I, being *slightly* anal retentive, was happy to stay up until 2 am unpacking and attempting to settle back into our home so that I would have less crap to look at when I awoke the next day.  Staying up would prove to not be in my favor as M started to get really uncomfortable within minutes of my head finally hitting my pillow and succumbing to sleep.  It finally became so bad for him that he was yelling and whining and I was worried that he would wake B up and then we'd really have ourselves some nighttime fun.  So I ended up transferring B into bed with the other half (who slept soundly through all of this, bless him)  and I took B's bed in the same room as M's.  M was up until 6 am burping and farting.  I had finally come to some sense and around 5 am gave him a pepcid ac, the only gas fighting medicine we had at the time.  (which is odd because, well, we have a lot of gas around our house, folks!)
So when we awoke at 10 am the next day, I was all sorts of out of whack.  That night was fine--not too much on the gas front--but Saturday, oh-dear-God, SATURDAY, it was so not good.  The poor kid was clearly uncomfortable for much of the day and by that night he was pacing and screaming in pain.  I'm talking the kind of screaming that could make a neighbor call the police and CPS on a family.  It was terrible to see him like that and to not know what in the heck was causing it or what to do.  And, you see, the thing about having a non-verbal autistic child is that you worry you are either a.) overreacting to every outburst or scream or, b.) not reacting enough.  This is what happened to the other half and I that night.  After M had paced for hours and the clock had reached 1 a.m., I (following previously mentioned option 'a') packed he and I a bag and got myself dressed in order to take him to the ER. The other half, however, (following option 'b') told me that I was 'a' and that the ER wouldn't be able to do anything to help him.  I finally relented, hit the kid up with some more pepcid,, and we all fell into a restless sleep around 2:30 a.m.  I'm going to fast-forward a bit to save you some more wordiness about discomfort, burping, and farting, so we'll skip ahead to Tuesday, a full three days after the peak of the indigestion.  By this point, the other half had been gone for 24 hours on a business trip and I could no longer watch M in such a state.  I took him to his doctor (after dropping B off at a friend's and packing yet another bag for a presumed trip to the ER) She agreed that I needed to bring him to the hospital for further testing.  Six hours later, we left after x-rays, an IV, a slew of blood tests, a catheter, and a 'high' enema.  (no, not just a 'low' enema, thank you very much)  The poor kid was so backed up that that day even his bladder had ended up blocked and took an entire hour to drain via catheter despite not having peed since about 11 hours earlier.  I'd like to note here that I am not a *complete* idiot and did realize that my child may have had some constipation issues.  However, I had been trying to manage them and he was going a slight bit ever couple of days.  If he hadn't gone at all for days I would have been more concerned about that than I was.  Lesson learned.
Now here's the kicker, though:  Two mornings later I awoke to find a voicemail on my phone that had been left the previous night at 12:30, while I slept.  The message was from an ER nurse who said that they were sorry to alarm me, however, one of M's lab cultures had just come back showing bacteria in his blood and they really needed me to bring him in for reevaluation.  AGH!  I spoke to the nurse who mentioned the word 'staph,' and away we went again to the ER for another seven hour visit.  It would turn out that we were one of the unlucky patients who had their lab sample contaminated by the naturally occurring staph flora we all have on the surface of our skin.  BUT, because he had started limping and they were worried it could be sepsis in his joint, they did a pelvic and hip x-ray while we were there that lead them to find a wicked crazy amount of gas still in his gut that they then gave him two hours worth of IV fluids and some zofran to treat.  Geez.  
On top of this (and because you, no doubt, are enraptured by my tale of my child's gas, poo and other bodily goings-on) we discovered that he has a condition called hyperphosphatemia.  Our doctor had asked that they test for this since M has also been hypocalcemic for years. (a thing that has just recently started to really concern me)  So it would seem that these two out-of-whack tests combined point to a possible parathyroid dysfunction which we will now see an endocrinologist for in a couple of months.  (Because that's how freaking long it takes to get into children's specialists, for those of y'all who aren't lucky enough to have to try to book these appointments)  We will also revisit the genetics department since it's been two years since we last did that and the ER doctor feels we need to continue to look into possible metabolic disorders for which testing may now be available.  (fingers crossed, though, that we don't find anything there...metabolic disorders can be s-c-a-r-y)

PHEW!  Are you still there?  Do I need to buy you a drink for still reading all this?  (Because I will, you know)

So instead of making my fingers ache anymore from typing, or make your eyes strain anymore from reading, I will leave you with some cheery photos from our lovely trip to Hawaii where both boys were incredible champs BOTH legs of the flight, and where having my mother-in-law there to help us proved to be the best decision we could have made!  I'm already ready to go back!


Mom to JBG said...

Oh, I am so sorry to hear all of this! What a complicated scenario with all those test and inconclusive sounding results. I hope it leads to some helpful discoveries. I don't understand why they can't speed up your appointments with the specialists, except I guess all the other families would like appointments speeded up, too. (I remember waiting nine months to see a specialist so we would could get the official word that our twins have autism)

The pictures are great, and I'm glad my advice about leaving M. home was totally wrong!

Valerie Foley said...

as we also lurk in the world of chronic gastro dysfunction, surprise announcements of unusual disorders and autism, I say...

'No drink required. I kinda dug reading all of that.'

I hope you get some answers.

FWIW, I hate giving my kid drugs but Somac and Osmolax are bring me a different boy right now. It's not for forever, but it's hopefully for good.

Hugs to you and your gaseous ones.


starnes family said...

I'm so glad you had fun, but of course, hate to hear of the struggles. My Jackie has some peculiar and similar issues. Mostly grown out of them, though.

I, too, arrive home from vacation and stay up for hours starting laundry and unpacking.

So glad you're nutty like me.

Mandy said...

Poor Mama Deb. That is no welcome homecoming. Holy crap!!!!