A Bradley Update

December 30, 2012

We'd been walking a thin line between ill and health with Bradley, and we did it for almost two months.  It wasn't something we wanted, but something that felt like it was on a slippery slope for us, the harder I tried to get him healthier the more he declined.  In November, he had these tonsils that were huge and sported spots, but the ENT that he had didn't worry about them too much.  But the swollen tonsils forced Bradley's tongue out more, his feeding seemed to slow, like he wasn't interested in swallowing anything larger than a pureed food.  The idea of chewing, less of a thrill than it had been.  One rude ENT was more than I could take and I switched his ENT's.  To make a long story short it's like this: I can take a rude staff if the doctor is worth it; the moment the doctor is rude to me; I change.  My son does not have to mean everything to you all the time, but for the fifteen minutes he is before you, that's when he better mean everything.  So we switched to the Pediatric ENT at UCLA, turns out she's the Head of the department, but she's also really nice.  The plan was to take Bradley's tonsils, his adenoids...put in ear tubes and do the Brain Stem Assessment to determine once and for all if our son has any sort of hearing loss.  This is important for all the obvious reasons, but our boy tends to panic at certain sounds especially with vibration.  So don't laugh with him against your shoulder, he can't handle the vibration of your laughter.  Oh and at the time he had a little bit of fluid on his right ear.  That fluid grew exponentially until his ear drum burst three days later.  What ensued from there on out is the stuff of a parent's nightmare.  The reaction to really strong antibiotics, the onset of croup and the immune system compromise that led to Hives and Diarrhea to the point we were concerned he was dumping.  You see, simple tummy flu with diarrhea is never simple with Bradley; so this reaction just creates the worst possible reactions in his tummy.  He dropped a pound and a half in a week, pounds he can't afford to lose, pounds we worked really hard to accumulate on him. 

We spent the next few weeks in and out of the hospital, phone calls over the weekend, phone calls to the Peds GI in Santa Barbara, all desperately trying to prevent further weight loss, further illness, a trip to the hospital for IV rehydration...  and that croupy cough wouldn't go away and became worse.  The week before Christmas, it became deep and wet.  The air stopped moving in his lungs and we started around the clock nebulizer treatments; which Bradley hates!  My son is incredibly strong already, and my son is a fighter - Thank you God! - but trying to give him a Nebulizer treatment is a workout.  A few in the middle of the night on day two he started to sleep halfway through and those were heavenly.  Despite our best efforts though, Saturday am he was awake and he seemed to be breathing very shallow.  He was gagging and retching, choking on mucus that I could not suction out or successfully vent enough from his tummy to prevent the retching that can lead to the unraveling of the precious Fundoplication that makes it so he can eat.  With nothing else to do; Eric took Bradley to the ER and I sat here at the house waiting with the girls.  There is nothing like those hours waiting...I took care of my Farm on Facebook, and built my castle...then couldn't do anything more as the hours dragged on, so I wrapped the rest of the kids' Christmas presents, and when Eric sent the text that said "Pneumonia" I packed my bag.  At 6 am I called my mom and asked her to come, and I waited while they were trying to transport my son to the hospital and my mom was making her way to us.  I didn't see him until 11:20am.  They had to attack the pneumonia with antibiotics and we waited and watched as they fought the pneumonia and the dumping as his digestive system fought against the antibiotics. 

I stayed Saturday night, and then because he had the time off; Eric stayed Sunday night and Monday night.  We knew that if they kept Bradley passed Christmas day I would have to stay till the weekend nights because Eric would have to go into work in the mornings.  Eric and Bradley spent Christmas Eve in the hospital and I left them feeling broken.  I couldn't figure out how to be with Bradley and the girls at the same time.  The hospital only allowed one parent to stay each night, even though Bradley was in a private room.  The docs were fantastic, the nurses...really horrible.  But, Christmas morning the doc came in and discharged Bradley so we could bring him home.  As Christmas miracles go; well this was a pretty big one.   When we walked in the door with Bradley his sisters started crying, both of them.  I knew Madison would, as she is a weeper and our most emotional.  I knew that things had been as tough as I had feared when Sydney wept like she did.  Not hysterical, but uncontrolled and from her soul.  And my heart broke a little for them; these two kids that were so strong and so flexible about their life - and yet with each of these episodes with Bradley I wonder if their flexibility will be tapped out and one of them will break.  For Eric and I - Every breath carries a prayer, please God let this be the last time; let Bradley's body be as strong as his heart and soul from this moment on.  Amen.

How did Bradley adjust to being home?  He walked over and dove into a present that Santa had left for him.  He unwrapped almost all of that one; but after that he was pretty happy to just tear the bows off of his presents and let mom unwrap for him.  He was pretty tired after all.  Now post Hospital five days, he coughs maybe once a day and the rattle is gone from his breath.  He's doing fantastic!  Oh and as for that starting of Pre-school in a couple weeks?  No, not right now.  Bradley will do his Pre-school at home and then in the Spring we'll revisit the idea of going off to join a Pre-school class.  For now, we just have to get him healthy, the rest will have to come when it comes.