Sunday, August 12, 2012

In my gut...

10 nights ago, I woke up to one of the two sounds that jolts me awake in the hardest of sleeps.  One of those sounds is a seizure, the other is retching.  Both mean Max is not well.

By the second time I was jolted awake, I knew in my gut something was wrong and we would end up in the hospital.  That was about 3:00am, and we had friends from out of town asleep upstairs along with Abbey.  We watched him through the night, and waited until morning to reassess.  The whole time I knew he was "off", and would need to go in, but still waited until it seemed like the best time to go.

We know now that if we would have gone in at 3:00am, they likely would not have seen the blockage that was forming.  And indeed, we caught it at the beginning stages of it.  But, inside, my Momma Gut knew something was wrong.

Through these past 10 days, I have had several of those Momma Gut moments.  Max's doctor calls is "Spidey Sense" and that makes me laugh...but really it's true.  I have a connection with Max that I don't have anyone else.

I wrote earlier this summer about Max's sleepless nights, and terrible chorea (uncontrollable jerky movements), and how we thought the lowered Vitamin D was the factor.    We hadn't had a way to test that theory, until Max ended up in the hospital and we had a way to test that hypothesis.  As is turned out, less than a week off of his food got him rocking and jerking with the chorea again.  Levels were drawn and Vitamin D supplemented, and the chorea stopped overnight.  Needless to say, we're all a little befuddled, and I especially am a little proud that it seems like my Momma Gut was right!  We are still watching this possibility, but as he's not had a dose of D since Friday, and this evening he's back to shaking with a dose due tomorrow morning, we're all a little anxious to see if it's going to work again.

On Thursday night, Max had some vomiting, so some heavy duty anti-nausea medicines were started around the clock.  That was great, it stopped the vomiting.  To the point where we were able to start some of his clear diet at a very slow rate into his stomach.  By yesterday, my Momma Gut started telling me something was wrong.  Max was acting just a little like he wanted to be sick, so I started venting his g-tube once an hour.  That worked for a bit, so I asked the doctors to take him off of the anti-nausea medicine.  It may seem counter-productive, but I wanted to see if he would throw up without the medicine.  There was talk starting again of if he could still have a blockage, since he had a hard time with bowel movements.  The doctors thought that he would still be getting sick over the medicine if that were the case, but my argument to that was he would not be able to get sick over the medicine if it were a Metabolic Crisis.  Those two words kick start every doctor into remembering he's not their typical patient, and they took the anti-nausea medicine off right away.  Within two guessed it, he was vomiting again.  By this morning, he had xrays done, and had stopped all feeds and was draining his stomach contents through the gtube back into a bag to gravity.

We don't know what's going on exactly.  When I left tonight, he was toying with the idea of spiking a fever. That I think is due to me asking for the round the clock tylenol to be taken off to see if he still got fevers too........seems that Momma Gut strikes again.   And Steve is dealing with more vomiting still tonight.

Tomorrow, hopefully we'll get some kind of answers. Maybe some imaging, a PICC line will be inserted so he has a safe access point for blood draws and getting his fluids, and talk of how to feed him when he's still dealing with so much vomiting. We don't even know what all the questions are yet...but we know that something's not right.  I know it in my gut...and I seem to be on a roll lately.

(Holding Max up for the first time in 10 days)


Junior said...

feel better Max, sending lots of hugs and prayers.

Amanda Jaksha said...

Great spidy sense, so sorry to hear Max is still so sick. Hugs to all.

Boliath said...

Sending love and strnegth to you all Deanna, keeping MAx in my thoughts xx