New Challenges

There's always something with Bradley.

Last week he started signing "red" and "blue"!  It's always exciting when he starts to sign a new word, it makes me feel like there is a bigger connection just waiting to be made between us.  He's working on letting me know when he likes and doesn't like something...and he is doing that through the words his hands make not just by his giggle or his tears.  The more he tells me with his hands, the less frustration we get by banging his head or throwing himself back - though for Bradley to throw himself back there is a HUGE amount of frustration going on.  Through it all I think about how far he's come in the past year.

This week I've been stuck in the memory of his hospital stay at Cottage Hospital.  From New Year's Eve till his birthday on January 9th, Bradley was their guest.  Usually I put these things away in my memory and try not to let them come bounding forward because truth be told, these are some of the most frightening moments of my life.  As brave as you can be at the moment, it's in the memories that surround you that you feel your weaknesses and your fear the most.  But I have now learned that my subconscious pulls them up for a reason and if they have jumped into my head consistently for any period of time I need to stop and take a look at them, no matter how painful they are - for inevitably there is something important there that I have to learn.

Two days after Christmas we found a hiatal hernia that was pushing into Bradley's chest cavity and making it hard for him to eat, and breath because of the pain.  His pediatrician, hiding his superman cape with great care, had him in a  Barium x-ray within the hour and we knew we had a serious situation on our hands.  Multiple surgeons were consulted and they were all out of town, the top two: his original surgeon at Balboa in San Diego, and the really excellent one that was at Cottage Hospital.  It was a frustrating week for us, Bradley was back on the pump 24 hours a day and was honestly so miserable that he didn't care that he was stuck on my lap or in his tiny play yard.  By New Year's Eve, he was on a 24 hour feed with his drip at 24mls per hour trying to buy us time.  He cried all the time and when we vented him to relieve the pain we took upwards of 30 to 40 mls each time, till we got to about 20ml every twenty to thirty minutes.  His Peds GI doc was on the phone with us all morning, starting at 4am when Bradley started retching.  By 1:30, we were headed to Santa Barbara...they had been expecting us since 4:30 am, because even then Bradley's doc had anticipated that we were at the end of our ability to take care of him at home.  What followed was a wrenching ninety minutes of stick after stick trying to get an IV...finally hitting it on the 6th try...then the Neonatal feeding tube had to go into his nose and down to his belly, lucky for us, they got that on the first try and even got it into the correct place.  The middle of the night we started glucose, that had dropped to a dangerous level and explained his inability or desire to raise his head.

The first three days the nurses were distant and clinical...as the surgery date approached; the surgeon was coming off vacation, Bradley was a little stronger and more likely to handle surgery better...the nurses were more open, more interactive...  I think we all had a doubt in our minds.  His surgery went well, he had trouble breathing after, but Respiratory came in and helped with that.  Once he was eating again five days later they were ready to send him home...he was sent out the door after all the nurses sang him Happy Birthday, and even a couple of his doctors and surgeons stopped in to add their voices.  He was given presents and he smiled and he played a little bit.  The same nurse who started with him, ended with him and of course, had to hold him down to unwrap that incredibly secured IV and take it out.  I felt bad for her, Bradley is never a fan of the nurse who gets this duty.  Eric and I?  Huge fans, she knew what she was doing and she managed some really difficult work on Bradley.

So while this keeps haunting the back of my mind, I keep trudging along through the days with him...his therapies and his work... caring for him and the rest of the family...trying to keep up.  Trying to keep ahead of his mind and its little quirks.  One of those quirks is his inability to connect with his OT from school.  She's come four times and he still shies away from her to the point that last week, he hid his head in the corner rather than look at her.  He wouldn't even come sit in my lap during the session, as if I have let him down by allowing this really lovely lady to keep coming to our house.  She's quite good at her job, but he just can't connect with her at all.  So I was thinking maybe try once more at a different time?  But today, he met a new Speech Therapist - and he played without trouble, so again I was baffled about why he wouldn't connect with this one particular woman.  And then I thought of that hospital stay again, and I had my "Ahhh" moment. I went from feeling curious to to certain.

I'd been trying to think of who has been in charge of his care lately, any nurse that he didn't take too...none at UCLA in January...none at Cottage in October last year, none at UCLA last March.  So I let that go, that can't be the reasoning, anything else is too far back in his memory, everyone has been really good....but then I had that memory and this time I played it through, and this time I noticed the most important difference in that hospital stay and all the others since.  January 2012... he was forced to have an IV right away and he was poked and poked till they got it.  All his others he was given medicines through his g-tube to relax him, then given gas to dilate his veins.  He was then given his IV while he was in twilight sleep, and Mom and Dad didn't have to help hold him down.  He has enough memory left of the nurse that we had to help hold him down for, the one that not only stuck and stuck till pay dirt, but the one that forced a tube down his nose so he could be nourished; the one that took all the needles out again before we brought him home.  And I say he has enough, because it turns out she not only looks, but her voice sounds like the OT therapist that he can't connect with now.

Somehow, Bradley is holding onto that memory in some part of him, and he remembers her maybe not as clearly as I do...but we were both traumatized by that time - we both have a clear image of her.  Once I felt certain I was on the right track I checked with Eric, asked him if he remembered that nurse...ha, what a joke...you don't forget stuff like that no matter how hard you try...  then I asked if he remembered the new OT that he's only met twice, he did remember her because she reminded him of the same nurse.  Did he think it was possible...yes possible.  Mostly, Bradley just isn't connecting so we have to make a change whatever the reasoning happens to be.  So the call has been made and the wheels are trying to get into motion to try and find a new therapist that hopefully, Bradley will like and connect with.

Do I think that Bradley remembers this woman...not sure...I mean he was really in trouble when they met.  But sometimes those are the memories that are most ingrained for us, the ones that are during your most traumatized times.  Whether or not this is the case for Bradley, those memories are in there for both of us and for me to walk with them for a couple weeks now it tells me that ignoring a message hidden in there would be counterproductive and downright unhealthy for both of us.

We spend a lot of time listening to the kids, trying to hear what they need and making sure that we provide it...now we have to trust in what our own minds are trying to tell us as well.  A long lesson plan for me, but I think I have it now.  I can't hide from the painful memories in his past, but apparently, I can sometimes learn from them.  I have to think of them the same as removing a band-aid; do it fast so that the pain doesn't keep festering and the area can start healing again.  I just hope that works in the future! ;-)