Battles against terminal illness, anxiety, and life!

Baltimore Continued

As we stepped out of our hotel room, I could feel the beads of sweat forming on my brow.  I was nervous as we crossed the lobby towards the waiting taxi.  What would today hold?  What will I learn?  Am I ready to hear what the experts have to say?  Will Braden surivive a full day at the hospital?  So many questions all swirling like a cocktail in my mind that I felt slightly intoxicated.  The crazy morning traffic and zig zagging driver thrusting me from my intoxication. 

The hospital was intimidatingly enormous.  Thankfully, we were directed by a very nice police officer to the correct entrance.  We were quickly given a bracelet and pointed in the direction of the entrance to a labyrinth of hallways and corridors that eventually led us to the A-T clinic.  Once inside we sprawled out and invaded our room, putting a dvd player on the table, books on a chair, and a sippy cup on the counter.  It was go time, and we had all of our Braden distractions in place.  Thankfully Braden enjoyed watching his dvd player with his headset on so he couldn’t hear most of what we discussed. 

It was unfortunate to have to start our day off with blood.  Poor Braden shook his head at me, started to cry, and plead, “Noooo.”  Nothing could have broken my heart faster.  Considering how well I handled the blood draw last time, my mom volunteered to go this time.  I did my absolute best to focus on what the doctor was telling me as I heard my son’s piercing screams from the next room.  In that instant, life felt incredibly cruel.  A minute or two later, the two of them returned.  Braden looked pitiful clutching a stuffed puppy they gave him for being brave, and my poor mother was saturated in Braden’s urine.  He had a pull up on, considering, but it went out the side and soaked her pants.  She spent the day in stinky clothes.  I owe her big time!  We won’t get his immunology results back for another three to four weeks.  We’ll get a  phone call with the results.

The next doctor, Braden really liked.  Of course that’s most likely because he got to run and chase balls, was tossed around, and treated as if he were the doctor’s own.  We were told that Braden does have telangiectasias in his eyes and by his nose.  We discussed the fact that most likely Braden will need a laparoscopic surgery to help with his reflux (provided it doesn’t improve more significantly soon with the introduction of his Prevacid a few weeks ago.) The surgery will put a kink at the end of his esophagus to prevent his food from coming back up.  We discussed how his feet turn in, and how orthotics will do little to help with it.  We went over how Braden’s school schedule should be modified, practical tips for every day living, and parenting.  We were taught how to spot lymphoma.  We learned that your cerebellum is responsible in helping you understand and have the ability to multiply, divide, read a non-digital clock, and to make change.  We had no idea!  What a strange new world we are in!

We didn’t get a swallowing study done.  Braden often chokes and gags on his food.  So, we have had great reason for concern.  Wouldn’t it just go to show that he didn’t choke or gag once when eating in front of the specialist?  Then, at dinner, he did so three times.  Never fails!  Regardless, the doctor who co-wrote the book on doing swallowing studies in young children advised against it.  Braden’s relationship with food is poor, and there is no way he would sit still enough or swallow enough to make the study effective.  Not to mention, radiation exposure is cumulative in your life.  We didn’t want to try the study, not have it work, and to have to expose him again.  Radiation exposure is dangerous for A-T children.  So, we opted to wait.  The doctor did conclude that she believes his choking, gagging, behaviors surrounding food, food venues, at the table,  and his relationship with food in general all stems from serious acid reflux. However, the texture and smell aversions are more closely linked with his exposure.   Eating is a complex issue in our home.

Braden has decreased lung quality.  I’m certain that his exposure didn’t help in this department.  He can become winded simply running from one side of the room to the other.  It doesn’t take much.  It’s not suspected to be asthma, but rather due to his lungs themselves.  Regardless, he has been placed on asthma medication.  The theory is that the steroids used in asthma medication might make it easier for him to breathe.  We are giving it a try for a moth or two, and then re-evaluating. 

There is no doubt that Braden is greatly affected from maternal substance exposure.  Whether we are simply dealing with Fetal Alcohol Syndrome or the fallout of his other exposures, or both, we are unsure. We were told that we have to battles occurring.  We are battling Braden’s A-T and his substance exposure.  Both issues need to be treated by medical professionals.  What’s unfortunate is that the way you treat one is not beneficial to the other.  This puts us in a really tough spot.  It’s believed we are in an unprecedented situation. 

I share this with you because it makes our battle completely unique.  It’s in the spirit of disclosure.  Our path may not follow a typical A-T child’s or a child exosed’s.  It’s unclear as to how his exposure affects his A-T.  We were told to try to not look for the cause of whatever situation we are facing.  To attempt to do so is futile and a waste of time.  The behavior is what it is.  Instead, we were told to simply create our own unique path, to do what works for Braden.  Our goal is to tackle each obstacle as it comes.  We may have to try a dozen different thing before we figure out what works best for him.  While this may cause many parents much distress, however, to me, it took the weight off my shoulders. We will do our best, be patient, and make our own path.  That feels more comfortable to me.

Conclusion to follow in the next few days.


Comments on: "Baltimore Continued" (4)

  1. Becky, you’re a remarkable person and Braden couldn’t be in better hands – he’s so very lucky to have you and your family. We’re all working together and working hard to help.

  2. Beacky, what a fantastic mother and woman you are… you and your family are so loving, so corageous, so fun… I wish you did not have to deal with all of this my friend. I will be praying for you all. HUGS

  3. Your strength is once again an inspiration. I look forward to hearing about the rest of your trip!

  4. Truthfully…all the people that think they need to follow “by the book” with their kids are seriously misguided. I mean all kids….kids with health issues and those without.

    Kids don’t come from cookie cutters. The best outcomes I have seen in all family scenarios, are the ones that realize that each individual child needs certain things, when another doesn’t. You find what works for you. (okay, you can listen to the other parents, doctors etc, but ultimately your gut tells you what is best).

    This is a hard road for you, but taking it just one day at a time will enable you to grow and learn at a slow pace.

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