Day 30: It's a Bradley update!

New Tubes...Healthier Ears!

I would promise not to rant, but I just might.  It was one of those really frustrating days, but there was also a lot of good stuff along the way too.  So, I guess you can call it a mixed bag kind of day.

We started today so early the sun was not up and was thinking of staying in bed I think.  We got ready to go and I gave Bradley his medicine.  With his reflux and the seizures they always tell me it's important to get those meds in him.  When we met the pre-op anesthesiologist last week, she said give it, I said okay, here's how I have to do that: in applesauce so that the Prevacid doesn't just sit in his stomach and so that it can get through the tube,  I was told no problem.

I was told wrong.  1 hour and 45 minutes later, they decided to postpone his surgery because of the 5ml of applesauce.  Eric and I just looked at each other dumbfounded.  They wanted us to wait an hour, but they didn't want to give him the Versed to chill him out...even after we told them it took a good half hour before the Versed kicks in for him.  So we were to wait for an 'hour" which is hospital speak for two, and THEN he would get Versed and then after it kicked in he would be taken back.  We just shook our heads, gave Bradley his IPad and watched the Holding room empty and then fill again.

As we sat and watched, we were jolted into a reality we never thought we would experience at this hospital.  With all my kids, I have always been so happy to have their care at a military hospital.  I think that sometimes the Children's Hospitals have a tendency to get a little jaded, sometimes they forget how scary things can be because they are dealing with scared kids everyday.  There has always been something special, something extra that our babies get from the military hospital that they don't get anywhere else.

When the girls had their Adenoids and Tonsils removed, they were taken such good care of, we were so relieved.  When Bradley had his Fundoplication and was in the PICU for ten days, half of them sedated, at one point his nurse had his morphine in his shirt pocket ready to administer at the first sign of trouble as we were trying to nurse his last remaining IV site until he could wake up and not need it anymore.  There's just something about military hospitals - not ERs, make no connection there; but, the hospital, and the OR where being used to so many adults, when a child passes through (for the most part) they are just really taken care of in a better way.  We all have our stories, we all have our moments where that is not true, but in comparison to some of the care we have had at Children's...well, we'll keep Balboa.

So there we were in our comfort area.  We'd spoken to Bradley's ENT, he just smiled at me, told me it wasn't our fault, don't apologize to him, he would take care of Bradley, it would be all right.  We had the same nurse that we've been Blessed to have through the rest of Bradley's procedures, and through both our girls.   Nurse Jeri has been with our most precious miracles during the hardest times and always bring them through it well, no matter which surgeon has them.  So, we felt pretty calm.  And then a Lt. Commander rocked our world.  Bradley's bed was the last bed in the line, the side of his bed literally parallel to the work desk, the space equivalent of almost two trashcans, I say almost because the staff had to move it every time they wanted to walk by.  So we were close, really close. Talking to herself, not to us, we never thought or accused her of talking to us, she stops shuffling papers and says about a record she is holding, "I'm holding the record.  I am such a Tard."  Then before we could overcome the shock to formulate an appropriate response that wouldn't include yelling or tears (I sometimes get so angry I cry, it's mortifying), she was gone upstairs to go pump milk for her child.  

Here's the thing.  I don't want you to say the word because the word is a horrible word and one that someday, someone, is going to say to my son.  It's a cruel world and I wish I could say it might never happen, but I can't.  The reality is that people don't think and people can be cruel.  People think that the worst thing to be would be developmentally disabled, and so what better insult?  If you're in your private world or space, I'm not going to say anything, probably look at you with pain that you've disappointed me, but it's not my place to be your mom or your judge.  Come at my kid and I will take you out!  Please understand the difference.  But when you use the term in a professional arena, someone is going to hear from me.  And when you use it somewhere where my son is supposed to be safe, and cared for, and you are one of the care givers, standby.  She took a place where he is supposed to be focused on and cared for: physically and mentally, and she broke it.  I told Bradley's ENT, that had she been an OR nurse taking care of him today, I would have pulled him out and taken him home, or she would have left the OR.  But she would not get the chance to care for my son.

Anyway, the Doc got a name for us, and when he came back with it, he let us know her name, he also let us know that he'd been gone a bit because he'd been talking to her.  He says she was mortified and apparently a mess...she wanted to come talk to us but he told her to get control of herself first.  He told us she is a good Nurse, spot on, good care...but he also said she was not aware that it was not ever the right thing to say especially when Bradley, and his parents are sitting right next to her.  I don't know if her World view changed today, or if she takes the shot to the ego for getting caught, shrugs it off and goes on with her day...I don't know.  I know what I want to believe...but I am naive most days.  I try to stay Bright side because Negativity feeds on my soul until there isn't much left, but there wasn't a lot of positive in this.  It left me sad, and it left me with this burden of wondering when/if someone was going to say it to Bradley with me around, without me, how would he take it when he is old enough to understand it?  Worrying about just getting through today, this surgery...there was no place or need to be worrying about tomorrow like that.

While we were discussing and discussing with Bradley's doc, we were busy doing two things:  we connected with him on a more personal level than we had before, and we solidified his view and his nonacceptance of that kind of offensive terminology.  In the back, Bradley was stubbornly holding onto the blood we needed him to give so that they can test him for Celiac Disease.  Getting his blood might have taken longer than the actual surgery.  It only took four people to hold him down to gas him, shocking every last one of them.  We tried to tell them, but we just kept being told how one guy has four kids and one has a three and a half year old....so....  I stopped talking and just laughed at the description of how they had to fight to get him on the table and then to sleep.  Then I want to weep seeing the countless sticks he was given trying to find the right vein to give up the blood.  Poor Baby!
Finally, we saw him again.  He slept forever, but finally woke up enough to head to Recovery! Needless to say, he was ready to go home as soon as he took one more little nap, ate and drank and gave a diaper to the cause.  Once he was fully awake, he ate four graham crackers, pudding, peaches and drank his water.  Then as soon as he could go home, we took off!  As we walked out of his room the Volunteer from the YMCA was there, she offered him a teddy bear or stuffed horse.  As she showed him I asked him in sign language, which one he wanted...he said "Horse" with an attempt at the sign and the word: it was beautiful!  He carried that horse all through the hospital, out into the courtyard and then dropped it to chase his shadow and trip over his unbalanced feet - that's when he went back in the stroller for the remainder of our adventure.

He doesn't like the ear drops he has to use, doesn't care for the feeling of pain that comes as his medicine wear off, and despite our warnings they still used tape on his eyes so that he looks rough tonight and will look like he lost a fight with Rocky tomorrow...but, but....he is asleep in his bed and snoring the light snore of a very tired little guy sleeping pretty darn good.

Pretty sure his mom will be doing the exact same thing very, very soon!  Bradley did good, and he didn't understand any of the negative stuff...so it worked out as good for him as a day of surgery can.  We enlightened at least one person...maybe that Nurse too.  But I heard from a few friends on Facebook who let me know of situations where they were taking the chance to connect others with Down syndrome, and other friends voicing their support...and that felt very good.  We were shocked by the blow, it came at the most surprising place...but we're still standing.  Still standing!