March Cardiology follow-up

Ammon had an appointment with the Cardiologist today and it went well :) Dr. Puchalski said Ammon's murmurs sound a little better since the cath and his oxygen will remain at 1/2 liter.  We will go back in three months and probably schedule another cath for this summer to re-check his pressures and make sure nothing further needs to be done. They can also try a few different medications while he is in the lab and see which one has the most desirable effect.

We spent a good deal of time discussing altitude.  That sounds silly, but it has been very much on our minds since Ammon's cath in January.  When Dr. Puchalski came out of the cath lab that day he wasn't expecting to run into us.  I think he may have been a little surprised at the numbers and how much work needed to be done.  He knew Ammon would need some work, but it was A LOT.  At the time we had asked him a little about altitude sickness and Dr. P.  made a comment - sort of in passing - that we should move to Texas to be at sea level. We wondered if we should take him seriously.

We wondered a lot actually.  We started questioning every provider/health care professional with which we came in contact.  All of their opinions varied.  Almost all concurred that Ammon would most definitely be better off at sea level because his oxygen saturation's would improve immediately (possibly no extra oxygen), he would most likely have more energy and feel a little better. We also wondered if it would extend his life at all.

This suggestion was SUPER hard to swallow.   Not so much because we would be required to move to another state, but because we had recently come up with a plan.  A plan for our future!  I mean we ACTUALLY AGREED on where we would like to end up! Not that we haven't agreed before, but things have just never worked out in our favor. This felt like it might actually be do-able and I think we were both excited.  And then Dr. P. came along and told us that our plan stunk. Well, kind of - in passing.

So we prayed. And PRAYED.  And PRAAAAYED. And Fasted.  First about moving to Texas - because Texas Childrens Hospital in Houston is #3 in the Nation for treating children with Heart Defects such as Ammons.  Luckily, that didn't feel like the best decision. Our next option was to move to California.  Lucille Hopkins at Stanford is #5 for the heart stuff.  Neither of us want to live in California. And then there was Seattle.   Its closer than Texas (drivable distance to family), but really didn't feel right. At least not right now.

So we continued asking questions. My thought was that if we wanted Heavenly Father to tell us what would be best not only for Ammon, but our ENTIRE little family, he would want us to do as much research as possible on our own BEFORE turning things over to him. So we asked questions - to anyone we could - the cath doctor at Primary's, the pediatrician, a respitory therapist (also at Primary's).... the list goes on.  All are very qualified in their fields, and all had more or less the same response.  Ammon WOULD do a little better at sea level, but probably JUST A LITTLE.  In the long run moving to sea level probably wouldn't do much to extend Ammon's life expectancy. And if we moved to sea level and his body acclimated, he would have a VERY DIFFICULT time coming back for vacations to visit family.

So our questions for Dr. Puchalski today focused on elevation and alternate treatment options (if Ammon doesn't qualify for the Fontan).  As it turns out moving 3500+ feet LOWER would only improve Ammon's oxygen saturation by a few points (every little bit helps relieve stress on his heart).  It MIGHT relieve his pressures, but there are other procedures that can be done for that (fenestration - making a whole in his heart which creates a small leak to relieve pressure which can be closed later).  There are also drugs in addition to what Ammon is already taking that can help lower his blood pressures. And then there is the cath lab. I am really starting to like the cath lab because it is a much less invasive alternate to open heart surgery.

Speaking of!  I found out something I had been mistaken about! Well, actually a few things. I was under the impression that if Ammon does not qualify for the Fontan they would not be able to remove the non-expandable stent in his LPA and as soon as he grew out of it he would begin heart failure.  Dr. P. said it would require an additional surgery, but it could be done. Also, if the drugs don't work to lower the pressures and qualify Ammon for the Fontan, they can try fenetration and over time the effects of it might help him qualify.  He said some kids have the Fontan done at six or seven years old.

AND The Fontan is not SCHEDULED for the minute Ammon hits 30 lbs.  Dr. P. said 30 lbs is more like a minimum.  If he is doing well at 30 lbs they will leave him alone until he starts to decline in some way (usually oxygen saturation). The Fontan will usually bump his saturation's up almost 10 points.

AND as far as transplants (not that we really need to visit this right now, but for future reference...) he said although it is VERY difficult to receive an infant heart and pretty difficult to get an adult one, there is a slightly better probability of receiving and "in between" sized one.  Mostly because people just don't donate their babies hearts and because there is a very high demand for adult ones, BUT there are not nearly as many reasons for needing an "in between" sized heart. That's interesting.

It was a good visit.  Really, we don't have too much to worry about RIGHT NOW. We asked a lot of "in the future" questions just to have a better idea of the direction we are heading.  John and I like to have a plan - something we are (both) working toward. I was relieved to hear that our "master plan" might be salvaged somewhat :)  Things never work out the way we plan them, but at least we are working toward SOMETHING :)