Friday, May 18, 2012


Being a regular anywhere is comforting, even in a specialist's office.  We walked into the g.i. clinic today, and were greeted warmly and personally by the receptionist, the norm for us these days in this particular location.  It's funny, when the practice realized Cole's condition was more serious than their initial thoughts, we became family.  Now, each visit is like a reunion, recapping time during peek a boo games with Cole, followed by the task at hand.

After we ran the gamut, the g.i. fellow beamed with pride as he told us about a recent conference he attended where he presented Cole as a case study.  Not only did the images from the scopes baffle the community here in Buffalo, but the they have also puzzled the national g.i. community.  Even the lead g.i. physician agreed that as they ventured through the meetings, there were very few suggestions, only questions regarding Cole's case.  Physicians here still feel that what they are seeing is something more than just Crohn's yet they cannot put their fingers on exactly what it is.

So, once again, based on a suggestion from the conference, we thought we would be heading towards new tests.  However, for now, we've hit a roadblock.  Our immunologist stated she would love to run the labs for us, unfortunately the current study is only being looked at in mice at this time.  Hope came in her next breath as she discussed the advances being made in immunology and how kids who don't quite fit in any given mold are being given their own molds, where others may fit as well.

For now, Cole is still a mystery.  Unlike the frustration of a Rubik's Cube, no matter how many twists and turns I manipulate with Cole, his giggle and smile make moving forward as easy as breathing.

Thursday, May 3, 2012


The other night I think I melted and dissolved into my bed.  Seriously, it had to be the soundest sleep I have had in some time, nothing rattling around in my head like a tennis match keeping my mind entertained instead of slumbering, just good solid, refreshing sleep.  I guess I must have been pretty tired since it's a rarity that I can hit the mute button to silence my brain for five minutes .

A week ago Cole went to the hospital for a routine orchiopexy procedure.  As soon as we arrived we were whisked away from the crowded waiting room into a private room due to Cole's limited immune function.  This put me at ease since our last visit to the hospital was the er, and there, despite our explanation from immunology, we were still sent back into the unknown environment of the waiting room.

During the pre-op procedures our nurse nonchalantly stated the baby had a murmur.  Immediately, like a reflex, I stated he did not.  She listened again and said, "No, I definitely hear a murmur.  Haven't you been told this before?"  Of course we had not.  As everything else looked well, we were sent to the surgical unit to meet with Cole's surgeon and his anesthesiologist.  Once again, they asked if we had been told about this murmur before and once again we stated we had not.  After a few different physicians listened to Cole's heart we were assured it was safe to go ahead with the surgery, just that they would use a type of anesthesia like an epidural once he was asleep instead of what they initially had planned.

After another explanation of exactly what the surgery entailed, we walked the last ten steps to the surgical door snuggling our unsuspecting son before he was pried from my arms.  As they turned the corner with him we could still hear him frantically calling for me down the hall.  There is nothing that can break your heart quite like your child calling for you and not being able to go to them.  In many ways it is much like this whole journey, I can watch him and comfort him, but in the end I can't do much of anything to fix what is wrong, no matter what I do.

Nick and I decided to head down to grab some coffee, since we had at least an hour and a half before Cole would be out of surgery.  To our surprise, when Nick's cell phone rang an hour later, we never expected the hospital on the other line.  I swore my heart stopped as I waited for some indication that everything was ok.
Seconds later we were headed back to the surgical unit, but just to recovery.  The surgery itself was not what the doctors had expected, and since there was little to reposition they finished much earlier than anticipated.  

Unlike after his colonoscopies, Cole was awake from the second I walked into the recovery room.  Despite the fact that he was awake, he didn't seem to have a care in the world as the morphine was working its magic.  After a few hours of nothing but cuddling we sent on our way home, with the reminder to follow up not only after the surgery, but with a cardiology group as well.

Now, a week later, Cole is doing fine.  In fact, the night of his surgery he was right back to his antics, climbing every piece of furniture he could pull himself up upon.  While we had a few restful nights we have also have had a few sleepless nights as well.  Nothing too far outside our realm of normal these days.

We were also lucky enough to get into see the cardiologist and learn the murmur is merely functional, he will not need a follow up, at least not with cardio.  Since Cole has a tendency to fall even when he is standing still or sitting, and there is not a cardiac related explanation we are now headed to see a neurologist.  Hopefully this visit will be as simple as our experience with cardiology.

Once again, thank you all for your support this past week.  It has been long, but filled with love, the sweetest acts from the girls to their brother, and of course hugs of gratitude from one very happy little boy.