Right Eye

Kiran had his one week post-op appointment yesterday with the eye surgeon. The doctor was quite pleased with the results, and we were told no more eye drops in the right eye!!!  Considering the hectic regimen of drops for the past week (3 in the morning, 2 three more times a day, ointment at night), this was welcome news!

For now, we are continuing the two dilating drops in the left eye. We will follow up in about a month to decide if it’s a good idea to take one or both of those drops away. It would be amazing to have Kiran off all meds for awhile!

Strength

Why am I awake at 11:30 pm when it has been a long, exhausting, emotional day?  Because I had to set an alarm for an hour ago to put an ointment in Kiran’s right eye, and then my brain switched on. I couldn’t possibly rest until I had fully wrapped my head around his eyedrops/ointment schedule and written down my questions for the eye doctor tomorrow.  We meet with him in 7 hours, because he was gracious enough to meet with us first thing so we can drive home in the morning. 

I was pretty ill yesterday. I was exhausted this morning. None of it mattered when the alarm went off at 4:40 am because it was go time. We had to be on the road by 5:30 this morning. None of it mattered when I had to answer a million questions and try to understand consent for scenarios I hadn’t allowed myself to imagine, all before my first sip of coffee because I wasn’t sure my stomach was ready to handle it yet. None of it mattered when I kissed my son and handed him over to the anesthesiologist one more time, trusting all would be well. And it certainly didn’t matter once he found his way back into my arms after a few drawn-out hours of waiting. 

I’d fight through anything to stand by my son’s side fighting for him. Some may say it’s the strength of a mother’s love – I say it’s all I can give, for this little lion of mine: He is far stronger than I will ever be. 

Eye Surgery

We heard a lot of possible scenarios going into eye surgery. I would say we came out with maybe one tier below best case….we are so thankful for this!

They were able to snip and pull back the pupillary membranes in his right eye that were blocking his vision. Once they did this, they determined it improved pupil size enough that they did not need to remove the small cataract. As long as it remains small, they will leave it be. Removing it today would have meant removing the lens – they had hoped it wasn’t adhering so strongly to his lens that it could just be lifted off – that wasn’t the case. 

We are thankful they opted to go with this conservative route. Had they removed the lens, it would have been likely they couldn’t implant a lens because Kiran’s eyes are so small (apparently yet another developmental thing – small eyes, right eye is even smaller than left). Without a lens, we would have had to put a contact lens in Kiran’s eye every day. Um. No thank you. Glad this was not our news. 

We have to try to keep Kiran from messing with his eye for about a week post-op. He is currently wearing an eye shield. We were sent home with the arm brace deals to hold his arms still if need be – we are thinking last resort on that. We also have a strict eye drop regimen for at least the next week. 

We were not warned but we have to follow up tomorrow with the eye doctor, so we just got to our hotel for the night. It is very good I am always prepared and packed an overnight bag just in case!  

Otherwise…we know he has small optic nerves on both sides. We know his vision isn’t the best but he doesn’t have a need for glasses at this point (I’m not sure I can really explain this so I won’t try). He is behind visually. They found astigmatism in both eyes, worse in his right eye. They don’t think they will need to do surgery on his left eye – it, too, has pupillary membranes but they are further out from the visual field so not affecting his sight. 

It was a lot. It’s been a long day. We are happy with the results. Kiran, as always, was a trooper. He didn’t cry at all going back (and we have never had to do a sedative), and he woke up calm and trying to hard to be happy.  I just love this kid. We are so lucky he’s ours. ❤

Hearing Update

The vision exam and hearing exam are both done. Eye surgery is now in progress. 

This morning, we were put on our heels when the ENT informed us there was a possibility Kiran would need tubes in his ears. The only time we had heard of tubes was due to chronic ear infections. Kiran hasn’t had a single ear infection in his entire life.  However, apparently chronic fluid buildup in the ear is another reason they put tubes in. 

His last hearing test – he had fluid in his ears – so if they found fluid today (and if it was thick and goopy fluid), they would want to put tubes in. 

There’s the background. This is what caught us off guard (and made me cry, let’s be honest, even though I know tubes aren’t a big deal). 

Here’s what we found: His hearing is normal!  There was no fluid in the ears!  No tubes!  No need to follow up with hearing checks!

Such a relief for us all. 

In OR 

They took Kiran back about 45 minutes ago. They booked the room for just under 4 hours, but we are hopeful it won’t take that long. 

We were taken aback with a few of the worst cases thrown at us this morning, but I will not waste my finger power typing them out until we know how the exams and surgery goes.

He is having a vision exam, a hearing exam, and surgery on his right eye. 

Please pray for best case scenarios all the way through. We appreciate the support you provide our family. 

Brief Update

I have been meaning to update. For weeks it seems. Since I have been ill today and we have surgery in Iowa City tomorrow, you just get the snapshots:

Remember that monumentally busy first week at the beginning of March?  It ended with Kiran graduating from home health nursing!  He received his last synagis shot that day and has been deemed stable enough to no longer need the nurse check-ups. This is huge and emotional. We have had – and loved – the same nurse from the day after we brought Kiran home from the hospital the first time. Aside from family and a few close friends, she has seen Kiran the most and knows him the best. How exciting to be graduating – yay, he’s healthy! – but how sad to say goodbye to someone who helped keep my sanity for so many months. 

We took our first plane trip as a family for fun March 10-15. We were able to visit friends in Seattle and had a wonderful time. It was so exciting to finally introduce him around!  We were also so thrilled to be able to take our family friend and babysitter along to introduce her to the city – and give us the freedom for nights out. 

I had such big plans for today. I worked hard yesterday getting the house ready and caught up for the week so I could really have a fun day with Kiran. He’s 17 months old today!  He goes in for eye surgery tomorrow. I wanted laughs and snuggles and books and just time with him. I always do, but today seemed important. 

Instead, I spent quality time being incredibly ill from about 2 am until 7 am – and the rest of the day weak and tired in bed, determined to not get Kiran sick and have to reschedule tomorrow. 

The plus?  It happened today and not tomorrow. I cannot imagine having to stay home and not be there for my baby boy. So. I will sleep, and we will have a very early start in the morning. 

I leave you with good moments from the last couple days – being introduced to the swings at the park. Finally. This mama has been waiting, and he did great!

G-Tube Change

I can’t believe I forgot this part of our day!  When the medical students were in getting the health history for our GI appointment, they asked if I was comfortable changing out the g-tube.  Short answer: No.  Long answer: Our g-tube change-out experiences have been pretty traumatic so far.

The first g-tube change-out was three months after the surgery to place it.  It was an office visit here in town at my former GI’s office.  The nurse talked me through it, and I did it.  It was easy!  I was confident!  THAT VERY NIGHT was the night the tube got pulled out when our babysitter was putting Kiran in his crib.  We came home as fast as we could but due to swelling and timing, we were unable to get the tube back in and had to take Kiran to the ER.  That remains the most stressful, horrible ER visit in his entire life – and, as you might recall, he has had many.  The dilators they had to use were really painful for Kiran, and I remember just laying next to him crying along with him.  It.  Was.  Awful.

So, three months after that, time to change it – I was determined to do it myself…but wanted the home health nurse here while I did it, in case.  The old one was hard to pull out – the nurse even said it was like there was an air bubble stuck behind it or something – and then when I saw the hole, I just kinda freaked out.  I couldn’t do it.  The nurse had to do it.

So yeah, I told the truth about our history and my discomfort and stress around changing the g-tube.  So the GI doc had her nurse come in to go through it with me another time.  We were due to change it at the end of this month anyway.  Now, I get the logistics of it – I know exactly HOW to change the g-tube.  Heck, I could teach anybody how to do it!  It’s the actual doing it.  Still, I let the nurse go through his teaching…and after a long morning of many appointments and having been up since 5 am, despite my uncertainty and anxiety around it all…I changed the g-tube.  I did it.  It didn’t go perfectly, but it went pretty damn smoothly.

And he went through in great detail the items we should always have with us – our “g-tube emergency kit” if you will…and went through what to do if the tube comes out and we can’t get it back in.  All stuff that would have been nice to know ten months ago when the g-tube was first placed.  Again – I am glad we are in Iowa City now.

Three months from now, when I have to change the g-tube at home without a nurse standing by…we will see how I do.  But.  I did it.  That’s one more time (two total, now) that I was able to successfully change it.

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!