Appts Update

Normally the first thing I want to do after a day of appointments in Iowa City is write.  I write to wrap my head around things, to “process out loud” in the way I am best able.  I generally do it on my phone, in the car, on our trip home.

I honestly can’t explain why yesterday was different.  I just didn’t want to.  I was exhausted, and I wasn’t ready to revisit the day.

We had good appointments.  Kiran’s echo and ekg looked good.  His pulmonary valve is leaking a little bit, but “that is to be expected”.  It is the most bizarre thing in the world to talk about … so nonchalantly.  I am learning about his heart all over again, post-surgery.  This leaking is the big thing we will be watching; it will be Kiran’s heart’s way of letting us know it’s time for a valve replacement.  Right now, Dr. R. said more than 90% of the blood is leaving his heart to get to the lungs (as it should be).  Less than 10% is going back into the heart (that’s where it “leaks” to – yes, I had to ask – leaking sounds bad).  This is apparently the definition of everything looking good at this point.  Once we get more to the 60/40 range – 60% going to lungs and 40% leaking back into the heart – we will then watch and wait for his right ventricle to enlarge … and only then will the risk of surgery be worth it.  Again – so bizarre – this heart world stuff.  We basically monitor and wait until his heart gets in pretty bad shape … and then we intervene.  We have no way of knowing when this will need to happen.  In an ideal world, the valve would make it until Kiran is in late adolescence.  Some kids need a valve replacement as early as 5 years old, others make it to pre-adolescence.  Only time will tell.  We did learn definitively that his first valve replacement will have to be another open heart surgery, due to the size of the valve that was placed.  If Dr. Hanley had been able to fit a larger valve in, the replacement could have been done in the cath lab, but Kiran was just not big enough for a bigger valve.  This was probably the one tough piece of news today, in an otherwise very positive appointment.

We are able to take Kiran off his post-op protocol aspirin.  He is down to only his two eye drops for medicine – NO HEART MEDS!  Everything looked good enough that we decided next steps will be one more lung perfusion scan next month.  Provided that looks good, we don’t need to see cardiology until early July.  We will be scheduling a cardiac cath for the summer – likely late July/early August.  Hoping that his pressures and everything will continue to look good so there will be no need for interventions.  All in all, everything looked good!

I think I may have intimidated the nutritionist a little bit.  She didn’t have much to add, and I feel like the appointment was basically her telling me what I was doing looked great.  I guess that’s a good thing!  I am glad to have her contact info, and I can reach out if I have questions down the line…but all in all, I don’t think it’s a necessary part of our medical regimen.

I really liked the GI doctor.  She seemed far more knowledgeable than my previous experience with a GI, and she was actually motivated to get the g-tube out – something I never experienced with our former GI.  She set a goal for g-tube removal by age 3.  In the first moments after hearing that, I kinda panicked…3 seems so far away…but I was quickly able to do the math.  Kiran is already 16 months old.  We have to not use the tube for six months before they will remove it, and she said she doesn’t like to remove it in the middle of cold and flu season.  So.  We have basically about a year to get Kiran to the point where we don’t need the tube at all in order to make that goal.  It does seem reasonable.  We start feeding therapy today, so I am hoping to get new tools and tricks to use to help us reach that goal.  Ultimately, in our situation, I still don’t feel GI brings much to the table.  He’s not on any GI-related meds, we have his feeding and pottying handled, there aren’t mysteries we are trying to solve here….He is simply fed primarily through a tube.  His growth and feeding can be monitored by his pediatrician.  But.  Since I liked her – and I figure it doesn’t hurt to have her on the medical team until we get the g-tube out – I figure we may as well see her when we are already there for cardiology appointments.

Kiran rocked the entire day.  He was so good for the echo and charmed all the medical students and doctors.  He fought sleep until we had to wait a long time for the GI doc (our last appt. of the day), so he was up from 5 am until about 10:30 am, when he finally gave in in mama’s arms.  He traveled well, slept well in the hotel the night before…just all of it.  He really is such an easygoing dude, and we are so, so lucky for this!  I can only hope it continues as he gets older and more aware of everything that’s happening.  Overall, I think he handles these big appointment days far better than his dad or me!

 

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