Day 23 of the Challenge, A new Challenge for Bradley

Bradley was good tonight, he was sweet and he went to sleep without too much fuss.  When I laid him down he fussed and tried to climb out of bed, so I laid him back down and then lay beside him.  I like to think that this is the way we transition him back to the idea of putting himself to bed, long ago before the tube, he knew how to do this...it is long forgotten.  Tonight, he wanted to be close to me. This is not an usual occurrence, most nights if we end up like this, he is on his pillow or at the foot of the bed, near but not touching.  Tonight, he needed to be touching me, he needed to feel comforted.

So here's the deal with Bradley.  He has had four ear infections since August of this year, two while on Antibiotics.  The last one, he was was supposed to be checked at four weeks, turns out we were already scheduled to see his ENT, handy!  Bradley's ears are still red and irritated, with so much debris it's really difficult to get any kind of movement from his eardrums.  It's time to make a move.

We went to see his Gastro doc the morning before we saw his ENT.  She took note that he seems to be refluxing a bit more so she upped his dosage of Prevacid.  As his Pediatrician told me yesterday, it's a "Whopping dose."  But he's been on the same dose since he was eight months old, he might be a bit used to it by now.  She also told us that the reflux is most likely what is causing the ear problems; especially since, Bradley has no other symptoms.  She sent a note up to ENT.  So while Dad went with Sydney to get her brand new military ID, since she is ten...I went to sit in Pharmacy Hell. Haven't heard of it?  Funny...It's right next to the Clowns, just past the Murderers and in the middle of the snake pit.  Haven't been to Balboa?  Yeah, you wouldn't know.  Anyway, from there we popped into Audiology where they couldn't get a good hearing test on Bradley because he just needs two Audiologists to test him still, and well...there was the issue of the occluded ears and all.

By the time we saw the ENT, he took a look, then smiled and told us, you know the tubes when they are in, work well...we need to take him in, clean his ears out, remove the tubes that are partially out and then put new ones in.  He also told us, let me know the next time Bradley is being sedated and I will make myself available and if I am just not physically here, someone I trust will be.  What more can a parent ask for?  Here we have this little guy with incredible behavior changes and complete misery with these ears and he not only gets it, but he also understands the need to not sedate Bradley until we can do so with as many people on board to do and get what they need at the same time.

Awesome in theory...except there's this...Bradley is in too much pain with his ears.  We were dosing him in the morning and then trying to get through the afternoon to dose him close to bedtime,,,that's a lot of Motrin, plus a dose of Tylenol if necessary in the afternoon just to get him through.  By Sunday, I was starting to worry that we were going to tear up his stomach and never give the new dose of Prevacid a chance to work.  So I let his Case Manager know the situation and our concerns.  Phone calls with her on Monday, and then trying to connect with his pediatrician's nurse on Tuesday...the phone line into Balboa is run by the same people who run the pharmacy, I swear.  I mean, when you call in and sit on hold the whole time I truly believe that if you were to record their hold music and play it backward it would say something about Satan and murdering your mama!  But that is pure conjecture on my part.

But I digress...I send an emailing explaining everything in great detail to his pediatrician, because he is a little out of the loop and is as worried about this Motrin issue as I am.  His nurse calls and asks us to come in on Wednesday afternoon.  We do, we expect twenty minutes and out...we were naive.  While we were there, he got the e-mail telling everyone (like a list of fifteen docs and nurses attached to Bradley) that the ENT is taking him in on the 30th of October, also inviting any of them that would like to coordinate their procedures or tests needs to let the ENT doc know and he would make the space available.  Because sometimes, you get to the hospital and someone helps you climb out of the snake pit and a lot can happen and it can happen quickly.  His Pediatrician sends us to ENT, who somehow finds the space to pop him in to a quick Pre-OP appt, and then sends us up to the Surgical clinic to speak to the Anesthesiologists.  Head spinning yet?  Ours certainly were.

We left the hospital with a new medication to help with the pain and protect his tummy a bit until the 30th when he will have another surgery that should help make our little boy feel so much better.  We're hoping that if we fix the ear issues, then we can truly determine if he needs a different anti-seizure med or if he can tolerate the one he is on now.  Should also give us a better notion of whether he is truly exhibiting behavior issues or if he just is tired of his ears hurting.  Lot of pressure to put on two tiny tubes, but hey, it's where we're out.

For now, we're trying to keep him comfortable, and trying to push him on the signs and coherency of words when we talk to him.  I use signs to tell him every Tuesday and Thursday night that "Daddy is at work, Bradley sits with mom in her chair.  If he fights, then we go to his bed."  He looks at my hands and he listens to my words and the last few attempts have been much better for both of us, I am so relieved!

Stand by for further developments as they come next Thursday for surgery day.