"Is this John Laton's Mother?"

January 26, 2011

Everytime someone from Egleston or Sibley calls me, that is how they greet me.  This morning, I was waiting for the call.  At our last cardiology check-up, Jack's heart looked great.  The pressures were lower, the right ventricle was thinned and pumping better than before, and the shunt was still open and functional.  Everything looked so good that the doctor said that she wanted to send the data to the "Cath Conference" so that the doctors could evaluate it and determine whether Jack needed his next surgery in February.  But she said that she thought that they would conclude that he didn't need it.  I crossed my fingers and prayed, but dared not plan on avoiding another heartbreak.

When the phone rang, I was at City Cafe and Bakery, enjoying the first breakfast with a friend that I had had in I can't remember how long.  I recognized the first few digits in the phone number as belonging to Sibley, and I caught my breath for just a moment.  When I answered the call, I felt confident that the news would be good, but I had trained myself not to hope to big, and so I braced myself, saying "Hello?"

The nurse who spoke was sweet, and delivered the results like an angel anchoring the evening news in Heaven.  "The doctors believe that Jack's heart is operating well at this time, and they see no need to do a cath at this time."  Aaaaaahhhh.  And then I breathe again.  Slowly at first, to calm myself.  Then I begin to barrage the poor nurse who drew the short straw and was assigned to call "Jack's Mama," for now the interrogation begins.  I was thrilled that Jack wouldn't need a surgery in the near future, but since I had planned on it, I needed to know the reasons, the risks, and what the new plan was. 

In short, Jack's heart is recovering from the months of damage it endured while the valve was fused closed.  They have no idea why (my words) but it's positive, and the pressures are lower than they were a few months ago.  Without the cath, they can't tell for sure how well the valve is opened, but the echo's show that the pressures are low, and so it's open enough to allow sufficient blood flow to support his organs.  If they went in anyway, they could damage the heart, or the valve.  Types of damage include opening the valve too much, causing leakage back into the right ventricle, (which would necessitate a valve replacement sooner) all the way up to rupture of the arteries or chambers.  Plus, in order to even do the cath, Jack would have to be put under and intubated, both of which are dangerous for a baby.

Now, in the meantime, they will "manage his case medically, in the clinic until circumstances warrant further scrutiny at the cath conference."  This essentially means that we will continue to visit the cardiologist regularly to have ekg's and echo's done on Jack's heart.  Our next appointment is in early March, and at that time we will assess the heart function and determine how frequently Jack will need to be seen.  The nurse couldn't tell me how frequently the doctor would want to see us, but I suspect that it may be every other month or so.  The changes we will look for are increased pressures in the heart, specifically the "gradient" across the pulmonary valve, which is how fast the blood speeds up going through the bottleneck that the narrowed opening causes.  Also, I will monitor his oxygen saturations at home to look for signs that the blood flow is not supporting his growing body, as well as monitoring his appetite, weight, mood and appearance. 

The good news is that he doesn't need surgery next month.  The bad news is that his heart isn't really "healed" and he will still need surgery at some point.   But the longer he can wait, the bigger he will be and the better able his body will be to handle the sedation.  They warned me a while ago that the worst part of this defect was the waiting.  That the repairs would be slow and deliberate in order to avoid doing damage that would make the life-long management more difficult.  So I'm prepared for the waiting. 

Really, I am......

But it's still hard.  I just keep looking at this sweet, fat little baby with the rosy cheeks and know that everything is alright.  He's amazed everyone with how well he's done thus far.  If it's okay with everyone else, I'm going to keep hoping to be amazed again, and again.  It never gets old, does it?

Love
Maggie and Jack