Some Days You Eat The Bear....

September 1, 2010

And Some Days The Bear Eats You

It's been a week of ups and downs for Jack and I.  To begin, last Saturday night, Jack slept 7.5 hours, as I described in the last post.  But then Sunday night, we stayed at GrandMary's house, and he woke up every three hours.  I was sure that he would sleep well there, but for some reason didn't.  So Monday morning, I woke up tired and in tears.  That happens sometimes, especially when you're sleep deprived.  But I pulled it together, because we were on the way to the cardiologist for Jack's follow up.  I assumed it would be a quick and easy visit with no surprises.  Boy was I wrong.  Can you feel the roller coaster tick-tick-ticking to the top, about to plunge terrifyingly over the crest?  Here goes...

Jack's oxygen saturations were at 97%, an almost unbelievably high number for a PA (pulmonary atresia) baby so soon after surgery.  So that was great.  Then, we weighed him, and he is closing in on 15 pounds, now at 14 pounds, 13 ounces.  Great!  But then the doctor came in and noticed that Jack's feet were cold.  She checked his capillary refill by pinching his toes, and seeing how fast they went from white, back to pink.  It apparently wasn't fast enough, so she ordered another echo, "just to check on things."  Whoosh!  The wind in my face as I plummet towards the earth.

The echo seemed to take forever, and I noticed the ultrasound tech furrowing her brow and concentrating intently on the images she was capturing.  This, I have found, is never a good sign.  What you want to see is a quick swipe over the great vessels, a lingering, yet business like perusal of the lower chambers, an inspection of the pulmonary valve, including sound recordings of the blood flow, and finally a fly over of the BT shunt.  I have observed about a dozen echo's on Jack, and this is usually the way things go, so when the tech spent a little extra time on the valve images, I began to worry.   The doctor began to explain that Jack was experiencing a gradient across the valve that was higher than the last echo.  This means that there is a "bottle neck" at the valve, because it isn't open enough, and the blood is having to speed up to get through the opening.  Basically, the last balloon cath procedure didn't open the valve enough.  Here come the stomach-churning loop-de-loops...

Somewhere along the way, I had missed the doctor telling me that Jack may have to have further procedures after the last one.  It's understandable, I have watched Jack go through so much, I eventually began to tune out the stuff that was scary, especially once he was growing and doing so much better.  She told me that this defect is so very hard on the families of babies born with it, because it required so much patience.  The accepted protocol is to go slowly, making small improvements, and then waiting to see how the heart grows, adapts and functions.  The alternate course would be to do a more agressive procedure that would possibly result in a damage to the valve.  This would mean a valve replacement earlier in the childs life, and then more frequent valve replacements as the child grew.  So there you go.  She suggested that Jack would need at least one more procedure, hopefully not open heart, although she didn't rule it out.  She estimated that he would need it within the next few months to a year, but we are waiting to see.  My knuckles are gripping the safety bars, face white and ashen, but the ride is coming to an end, I can see the pavillion in sight...

On a positive note, Jack's valve didn't appear to be leaking backwards into the right ventricle very much.  This is great news, I think.  It could mean that the pressures are too great "forward" through the valve.  She did say that leakage could be tolerated for quite a long time, so that's something.  I saw a commercial recently that advertised research going on at Emory to replace heart valves through arthroscopic and catheter pathways, rather than open heart surgery.  I asked Jack's doctor about this research, and she confirmed that the procedure is already being done on adults, but that they anticipate doing it on adolescents soon.  It required a fairly large vein, so it's not an option for Jack yet, but maybe by the time he needs a valve replacement (which is a certainty) they will be able to do it in this manner.  Finally some promising, if not currently helpful, news about Jack's options.  Ahhhhh, safely out of the coaster car, and on firm ground...

Ok, so I'm not really so relaxed as if the ride is over, but I'm getting better as the days between the appointment and us increase.  We will go back in two weeks for another follow up.  It looks like that is our plan for the forseable future.  The "wait and see" approach has to be balanced with the "look frequently enough so as to not miss anything" approach.

And finally, I have some news that I'm really reluctant to share.  I am a little worried that I'm going to jinx it, but here goes....  Jack has slept all night (8 hours or more) in his own bed for the past two nights!!  As I type this, he is sprawled out in his bed, sleeping soundly.  He is such a great sleeper!  The only problem is that I have to keep him awake late enough, so that he doesn't awake at 4am.  Although if he does, I just feed him and he seems to be going back to sleep for an hour or two.  This gives me time to shower, do a few chores, basically get a little caught up on my OCD standards in house cleaning and de-cluttering.  Quite a ways to go, but still, I love it!  I feel like I'm rejoining the world!

Love
Maggie