Day of Diagnosis

Easiest way to start the story- with the shocker beginning.   Email to friends and family almost a year ago (unedited):
Sent: Sat, July 17, 2010 5:39:23 PM
Subject: worst day ever

wednesday afternoon ben started some weird breathing, so i called his dr’s office, and they couldn’t see us so sent us to urgent care where the dr said, oh it’s asthma, gave him a nebulized albuterol treatment and some steroids, and sent us home.  i was at first really bummed by that diagnosis, but then i started thinking, what the hell? what about this is asthma? sure his breathing was abnormal, but there was no wheezing, his blood oxygen was fine, his chest xray was negative…  then later he started throwing up, and i thought oh no! his cousin had a quick stomach flu last week, and as his mom was dropping him off at our house that day, she was saying how she just got it.  so then i thought maybe that was related to the flu, and just great, we had a few days to pack to move (the house we were staying in had been sold) and i’d probably be throwing up too by the time the movers arrived. 
but as the night progressed, i started to get worried bc i didn’t know if we were missing something.  but what to do? urgent care didn’t help (come to findout later that not only did they not help they exacerbated the situation with the steroids.  i will deal with that doctor later.)
then after a while, there was no more vomiting, and he kept down some water and seemed to try to fall asleep even though he was makign these sounds with his breath… to me at the time it sounded like his tummy hurt or something.  to those of you who are health care workers, you are sick to your stomach because you may know what’s coming next. 
i drove to the dr – by now it’s morning, and while the dr is checkign him out and getting pretty concerned, ben pretty much starts crashing.  we raced to the emergency room a few buildings over- a place i should have taken him hours ago- and they sat me on the cart with this baby on my lap- my wilted little baby- and i thought oh my god, i could lose my baby today.   and the team swarmed him with iv lines and oxygen and started endless tests and within an hour came up with the baseline problem- he has fucking type 1 diabetes.  he had some pretty severe metabolic acidosis.   by this time ben’s dad was there. he had planned to come to town that day anyhow to help us with the move this weekend. 
they worked to stabilize him, and things were turning around a bit, but they wanted the experts. it was a a severe case, and they don’t really see diabetes in such a little baby. my little 10 1/2 month old baby who just shines like the sun and is so strong and smart and can freaking walk!- so they transported him to the icu at stanford’s children’s hospital where ben has had a team of superstars work to titrate the balance of all the craziness out of whack in him.   at some point ben’s primary had shown up to check on him, and she was shocked to learn of his diagnosis- but he’s so young! she exclaimed to which i responded- well, he’s very advanced.  she laughed and then looked at me worriedly as if to wonder if i shoudl be admitted to the hospital too.
thursday was the most horrible day of my life.  little ben was just struggling internally for god knows how long, and by the time the symptoms started , they were misleading for so long as to keep his life saving diagnosis at bay for almost too long. it makes me sick to think about how long i sat next to my sick baby without doing the right thing.
 and that whole day we waited while some things corrected themselves but not the thing i wanted to see yet- my little baby really come around.  the drs were telling us not to get discouraged – that we ‘d have to wait upwards of 12 hrs after the start of his being treated to see some real life behind his eyes  and we did, and it slowly got better, and he slowly started recognizing us and reaching for me and crying when he should cry, and the next day he was smiling and watching more and messing withsome toys. 
at this point we asked the nurse if we could have that little sponge on a stick you can put in water and swab a patient’s mouth or to give a tiny bit of water.  they said yes, and tony tried holding the cup and dipping the swab and dabbing ben’s mouth, and ben was getting pissed,so i said give it to him!  and my smart little baby took his little sponge-stick and was dipping it in the cup of water and sucking on it, and as those drs who the day before had been peering for signs in his pupils the day before were huddling in our door discussing him, i said HEY look at my baby.  so happy for my little guy. he was doing a world better.  and we got to feed him that night.  holy shit did he love it.  he was smiling and trying to talk so badly but he doesn’t know words , and kicking his little legs from excitement….]
and today they were talking about getting out of the icu and going to a more mellow floor and starting our education in how to take care of him from now on, blood glucose testing, insulin shots, etc, when they discovered he had a blood clot from one of his catheters.  roller coaster.   but he’s on blood thinners , and hopefully this will resolve without issue (even though it will take months of daily shots. more shots) at any rate, we’re still in the icu.  he’s  so much better, not totally, and there is this blood clot to darken the scene, but it will be ok.  someday soon.
and tomorrow andy and his buddy max are taking a uhaul to my house and putting my stuff in storage for the time being.
we’re not going anywhere.  thanks so much to those of you who had helped orchestrate the upcoming move to seattle by helpigng to find apt, movers, etc,  i appreciate your kindness,but we ‘re sticking around here as this next year will be a huge learning experience , and we need to stay close by his doctors.   plus i think i have a job with one of his drs doing some advocacy work.  later. right now we’re still working through this episode.
but let me start the advocacy with this:   you probably already know- increased thirst and urinary output is a sign of diabetes.  i knew that. but listen to how it presented itself. abouta  week or so ago, i started watering down ben’s bottles at night- he’s a big boy and needs to just sleep through the night like babies half his age.  so , one plan was to gradually switch out all the formula for water till he stopped wakign up for it. i did that, and he would pee through his diapers at night, and i thought well duh he just drank a bottle of water. also, he was getting so good at sippy cups and eatign and drinknig like a big boy…  of course he’d pee more. 
guess it was more than that. spread the word.
oh, and everyone keeps asking if we had any diabetes in the family- no on both sides.  then one dr said to me well, 90% of cases aren’t from families with a diabetic.  then why do they keep asking me that??  he said because they could have another treatment option.  most likely it had to do with a virus he was exposed to at some triggering an autoimmune response…whatever. doesn’t matter. it’s here to stay.
so there you have it folks.  little ben was so incredibly sick, but he’s getting better all the time and will be fine.  except with a chronic illness.  but he still can do anything. except serve in the military which is just fine by me.
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2 Responses to Day of Diagnosis

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