Appt Updates

For our second appointment in Iowa City yesterday, we met with a nurse practitioner who focuses on the overall development of the child.  Her goal was to look at the big picture of Kiran’s life and make sure he is seeing all the specialists he needs to see and getting all the services he needs to be getting.  She mentioned that he is doing better than she expected.  For fine motor skills, she felt he was right where he should be at this age.  For social and talking and those types of skills, she felt he was in the 11-13 month range.  (He is 15 months old, today actually!)  He is farthest behind in the gross motor category – this is the rolling and crawling and sitting and standing – so not a surprise to me.  She placed him in about the 9 month range for these skills.  She did mention, much to my encouragement, that during the sick period, when these heart kids are waiting on their surgery, they do simply stop developing.  We saw it.  Kiran progressed pretty well for the first few months of his life, but as he got bigger and sicker, he didn’t make much progress.  I’m glad this is “normal”, because I sometimes have struggled with feeling like maybe I didn’t do enough to help him develop.  But then I think back on that time, and he really was using all his energy to just breathe and be alive.

She felt we are doing what we need to be doing for Kiran.  He is getting the services she would have recommended already, and her at home recommendations are all things we are already doing with him.  I did request she set us up with a GI doctor in Iowa City and a dietician.  She also asked if we would like to see dermatology just to establish a baseline for the birthmark on his leg, so it can be monitored for any changes.  I don’t think this is a bad idea, so we agreed to that as well.  It seems my hopes for fewer medical appointments would continue to be shattered yesterday.

Our third and final appointment of the day turned out to be the one we needed the most brainpower for – and of course, by that point, we were simply exhausted.  We met with the genetic eye doctor for a follow-up.  She was able to get a better look than she has ever gotten before.  Kiran’s optic nerve is small.  I am not sure I completely understood everything she was saying, but I guess when the optic nerve is small, oftentimes the pituitary gland is affected in some way.  An MRI continues to be something we will need to do in the near future.  Since it may be awhile before this happens (I will get to why in a moment), she is going to set us up with an appointment with an endocrinologist.  We would be specifically looking for growth hormone issues and another hormone that would affect how Kiran recovers from illness or anesthesia.  Those are the two big things involving the pituitary gland.

Again, that is only my very basic understanding, because my brain actually kinda shut down after hearing the next news.  Kiran needs eye surgery.  Way back when, I wrote about how he has pupillary membranes in his eye – specifically his right eye, which is also the eye with the small cataract.  These membranes generally break away at or shortly after birth, and for whatever reason, they didn’t.  They are affecting his vision in the right eye.  His right eye doesn’t dilate as much as his left.  If we don’t do surgery in the near future to remove the membranes, Kiran will start preferring his left eye.  This of course will affect his vision and how he processes visual stimuli, so it is obviously something we want to take care of soon.

Surgery is not something I was expecting to hear, and it is not what I wanted to hear.  Obviously.  I was already concerned about how many procedures and tests he needs to have done that involve either sedation (which I learned yesterday comes with its own risks and in some cases can be even more dangerous for heart kids) or anesthesia.  The good news is they should be able to coordinate the hearing test and eye exam while he is under for the eye surgery.  I will be writing an email to Dr. R, cardiologist, later today to outline a plan for all the other things coming up – and to make sure he feels Kiran is stable enough for this surgery.  I don’t think any other tests can be coordinated.  The lung perfusion scan is done in a room with a very large piece of specific equipment.  His cardiac cath will be done in the cath lab.  I have a feeling the MRI will be pushed out until after all of these other tests and procedures are done, so may not happen until next winter.  I am anxious to hear what Dr. R’s recommendations are as far as spacing all of these things out.  I need to get my head wrapped around a medical schedule for the next year.

It is overwhelming, but I am thankful to be overwhelmed today.


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