Recovery

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.

Pictures

What a way to end winter!  Like a blanket on a cold day, we have been engulfed in warmth and have shaken the chill of winter from our bones.  This week has just been amazing!  From a picnic in the park, followed by countless walks, as well as chalk drawings and sprinkler runs it has been the best March I can ever remember!

Despite all the fun of the week we also had a number of appointments for Cole as well.  We started Monday with a seven vial draw.  Initially the immunologist told us her test results would take a few weeks, however they have already contacted us.  Unfortunately, Cole's tests show he is "naive" to all of the viruses they were looking for.  In other words, he has never had experience with these viruses, thus has not made any antibodies against them.  The hope was that the tests would show some antibodies against one of these viruses as it would indicate Cole's ability to handle these kinds of infections without serious problems.  Since they do not, we will continue keeping our man in his virtual bubble, prolonging the avoidance measures we have been employing for a while longer.  We'd rather be safe than sorry since it has been explained that any possible contraction of these illnesses could not only be serious, but life-threatening for Cole.  The sooner we know about any likely exposure or infection the sooner aggressive treatment with antivirals or IVIG can begin.

A year ago I think my head would have spun with the thoughts of intravenous treatments with one of my kids, but now, I have come to expect the unexpected in terms of what all of Cole's doctors might tell me and accept any test or treatment without blinking an eye.  When the girls were his age, I cringed at the idea of their shots, now, I realize shots are a piece of cake!  Honestly, right now I am more concerned with Cole's continued weight loss than anything else.  Losing weight tangible while all the rest is merely a matter of if.  Maybe that's an odd way to look at all this, but we are more or less no longer social exposures are pretty limited and that eases my mind a tad.

After the blood draws, Cole saw his pediatrician for a routine appointment.  Other than the additional weight loss, things looked ok.  At this point, Cole is now down about two pounds in the past month.  At least our doctor reassured us that we were doing all the right things to promote healthy eating, and ultimately, weight gain for Cole.  It would be a matter of whether or not he actually wanted to eat that would determine whether he would gain soon.  Since everything looks good right now, we just need clearance from g.i. and we will be able to move forward with a minor surgery we have had to put off for Cole.  Hopefully we can schedule soon so he is recovered before summer.

Once we were done with the back to back appointments, I wanted to enjoy the day with my two littles.  While we have to avoid crowds, as well as enclosed spaces, Cole's stroller on a quiet trail is just fine.  Since we have not been out as much as we were with the girls, it's funny to see Cole's entire face blaze with amazement as he discovers bits and pieces about his world.  Both Gwyn and Cole were fascinated with a pair of ducks in the park.  Gwyn's quacks and Cole's claps and giggles while the ducks waddled, flapped their wings, then splashed into the pond were absolutely priceless!  Just like the sounds of laughter floating through the neighborhood while the kids rode their bikes and ran through their artificial rain, these tiny moments have etched themselves alongside my other favorite memories from my time as mom, creating pictures of how I always imagined life with kids would be.  This is how I will choose to think of these days, even though indelible images of antiseptic waiting rooms and offices often monopolize my mind.