Sunday, April 14, 2013

I Didn't Expect This...I'm Overwhelmed

So I'm sure you've read the previous post...Little Man has had a lot happen in the few days.  It's a shock, but we're dealing with it and I'm trying to process it so I can help others understand my unique Little Man. 

He was seen Friday morning for a modified barium swallow at Concord Hospital.  Unfortunately he now requires his liquids to be thickened to honey consistency.  His epiglottis (the flap that flops back and forth between covering the windpipe versus the esophagus, depending on if you're breathing or eating) is anatomically incorrect/abnormal.  I don't know the specifics or the specific diagnosis for it, but now we're waiting for a referral for a Pediatric ENT.  The feeding and swallowing specialist for the SMS (Special Medical Services) told me that she'll be coming over in a couple of weeks to go over the DVD video from the visit and explain things to me.  She also will get a written report to me at some point in the next week.  The prescription for the thickener was sent, but unfortunately nobody can fill it and by the time I was notified, it was too late.  I've called every pharmacy in the area and they can't fill it.  So Monday morning I have to call one more and ask for it to be special ordered, in the mean time I have to thicken his drinks by using applesauce.  The ratio is 4oz of juice to 8oz of applesauce roughly, I just add applesauce until it roughly appears to be as thick as honey.  This alone has been difficult.  We have a follow-up visit with the Pediatric GI Thursday to discuss the results of the study and where we go from here.

Then to top it off, Friday afternoon we took a trip to the CHaD Child Development Center.  We got shocking news and a diagnosis.  Little Man has been diagnosed with an Autism Spectrum Disorder (ASD), hypotonicity, and transient alteration of awareness.  It came as a shock...even more shocking the doctor heard a murmur and we have to see his pediatrician for a follow-up to it and see if we need a referral to see a Pediatric Cardiologist.  We also will be having an overnight visit at CHaD for a prolonged video EEG to see if he has seizures/to rule out epilepsy (apparently children who are autistic have a higher risk of epilepsy); Little Man has these staring spells and that's why he's been diagnosed with the transient alteration of awareness (he actually had one during the visit with the doctor).  After the electrodes are removed, they'll do a blood draw and check him for a few other things.  As for the murmur, it could be indicative of a vascular ring or sling and they need to be ruled out.

I think about Little Man and his diagnosis along with the other things that he has and it just brings tears to my eyes.  I know that I need a good cry to help cope, but I just don't have anyone that understands what I'm going through.  My friends don't know and frankly talking with them isn't really an option.  Then there's my family, I know they mean well and all, but they don't understand how I feel and what is happening.  In my mind he's still my little boy and will always be my little boy, however, I can't help but wonder why this is happening to him and to us.  My in-laws, however, appear to be stunned/shocked by this diagnosis and don't really know what to say.  I have a strange feeling that I will be answering and doing a lot of explaining to them so they understand it.  

I have a friend from church, well actually a former classmate's mother is a friend of my parents and someone I consider to be my friend.  She knows what I am going through and is there for me.  She's offering to help me learn to best advocate for Little Man and provide some additional resources/contacts to help be sure I do all that I can for Little Man.

Then my Saturday didn't start out as I would've liked...Little Man was up at 6:45AM screaming and crying...he was pointing to his throat and saying "boo-boo."  I told him that as soon as the doctor's office opened I'd call and see if they could see him.  Well I called and informed them that he was complaining his throat hurt; they got him in pretty quickly and during the exam the doctor asked me if his ears were bothering him...come to find out the rapid strep test was negative and they were culturing it too.  Then the doctor did send a prescription for amoxicillin to the pharmacy, I had no idea why so I asked and the doctor informed me that he had an ear infection.  So I'm just a tad bit on the tired side due to lack of sleep. 

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