And just like that…we are buckled in and on the road home! Kiran was a trooper. Six hours lying flat wasn’t simple – and he definitely expresses more frustration nowadays – but we made it!
Month: October 2017
Well, our little Kiran continues to be a rockstar! We just met with the surgeon. Everything looked good! Pressures were good, and the blood flow was going into all lobes of his lungs. No intervention needed!!!! He said this is one of the best repairs he’s seen.
Likely discharged around 3 or 4 pm today!!!
Thank you for the prayers! WOW.
Prayers for Cath Today
Kiran was taken back to the cath lab about a half hour ago. This is a planned one year post-op cath. We know it is likely they will do some ballooning or potentially place stents to help with blood flow into the upper lobes of his lungs.
Prayers and distractions appreciated while we wait to see our baby boy again.
Superhero Heart Run
Team Keen on Kiran will be walking this Sunday at the Superhero Heart Run in Des Moines! If you are interested in joining our team, you can register here: https://my.superheroheartrun.com/des-moines/events/des-moines-ia-2017-superhero-heart-run/e135844
We would love to have more people walking with us! If you are unable to or are not local but would still like to give to the cause, you can do so here: https://my.superheroheartrun.com/fundraise/team?ftid=124476
Proceeds benefit two local heart organizations that have touched our lives, supporting us and other heart families in Iowa and beyond.
List of Diagnoses
It has just been a hard day. It has been a day full of hurt. A day full of fear. A day of wanting to hide away and being unable to. Our world feels chaotic. Violence and the threat of it have hit too close in my community today. My heart was already hurting for the world.
And then. Something that shouldn’t have hit me as hard as it did. It all started about a week ago, when I noticed on the OT evaluation form at Childserve that Microcephaly was listed right next to Kiran’s CHD diagnosis. And I questioned it. I said “I know Kiran has a small head (By the way, microcephaly is just a fancy word for small head essentially, thus was the strength of my denial), but no one has ever talked to me about this as an actual diagnosis. I don’t think this is right.” So Kiran’s wonderful OT (We really do love everyone we work with at Childserve.) looked into it and found the source of the diagnosis: our pediatrician’s office.
The whole thing struck me as so odd. I have said a million times how much I love our pediatrician (Still do; she was awesome today as usual, calling me back very quickly to answer my questions.) – I always have my list of questions, she always has her list of things to go over, we always communicate very well. She lets me over-communicate, tell the whole story, which I prefer to do in every scenario. So I just found it odd that Microcephaly would have been added as a diagnosis without us talking about it.
We happened to go in for shots today – We wanted to get his flu shot in early in the season, and we are pushing his two year well child exam until after his cath later this month – so I asked our (also beloved) Nurse R about it. She assured me microcephaly just means “small head” and she let me know Dr. J added it to his diagnosis list at his last checkup in April.
As I said, Dr. J called me very quickly, given I was told she had a very busy schedule today. I always appreciate her. Always. Really, it should have been an active diagnosis from birth, and she realized she hadn’t put it on his list yet. It wasn’t added because of any new concern – it is just that his head size is something we have talked about and monitored his entire life. It IS small for his age. It also IS growing on his own little curve. And it is a good thing to have noted as we approach the brain MRI we have been putting off.
Because, it’s time. Some further digging, I noticed genetics in December of last year had microcephaly documented twice on Kiran’s assessment with them. I had forgotten that they, too, had encouraged us to get a brain MRI done on Kiran. So, that’s an ophthalmologist, a geneticist, and a pediatrician that all agree a brain MRI would give us useful information about our son.
I looked at one website about microcephaly. Here are some of the problems linked with it, taken directly from the website:
- Developmental delay, such as problems with speech or other developmental milestones (like sitting, standing, and walking)
- Intellectual disability (decreased ability to learn and function in daily life)
- Problems with movement and balance
- Feeding problems, such as difficulty swallowing
- Hearing loss
- Vision problems
We don’t know Kiran’s whole story, but we know he has global developmental delays, with significant speech delays just assessed. We know he has feeding problems, with a strong indication that swallowing is a big part of that. We know he has vision problems.
I won’t assume this diagnosis is the answer to everything. Until we get a brain MRI, we don’t know for sure what is going on….but it could be the answer to the hard questions I’ve been asking for the past year. It is true Kiran spent the first ten months of life focused on just staying alive….but he also never had significant hospital stays, was never intubated for long periods of time….it also just hasn’t quite added up why we are so far behind. Especially since everything they recommend for kids with microcephaly…I have been doing with Kiran.
I had to grieve this one. Even though it changed NOTHING. We have always known Kiran has a small head. We have been monitoring it; I have asked about it several times. I’ve even worried about it. But something about that term – microcephaly – and something about the significance of the diagnosis, so much so that OT would want to list it right next to his heart defect….
It just seemed big. Even though Kiran is still Kiran. Maybe he just has a small head. Or maybe it is an indicator of something going on with his brain. But he is still Kiran. No matter what we find out.
The current plan – I feel this has been our excuse all along – is to get through his heart cath at the end of this month. Once we know the results of the cath, we will discuss the risks/safety of doing a brain MRI with Kiran’s cardiologist. If he gives the okay, we will move forward in scheduling it. It’s. Just. Time. It’s time to know definitively what is going on in Kiran’s brain, not because it changes who he is…and not even necessarily because it will change all we are doing for him…but because it’s time to start finding some more answers, now.