Kiran and I had a busy day today, leaving the house around 9:30 this morning and not returning until around 2:30.  We both needed a nap – he is the only one who got one – I had to settle for the adult substitute (COFFEE).

We started physical therapy at Childserve last week, and we love the PT and assistant we work with there!  They both seem very knowledgeable and love what they are doing – and they tolerate my incessant questions and comments about our journey.

After our session there this morning, we stopped at Nana’s work to visit the ladies briefly and to have lunch.  Then – because Papa Joe has been quite adamant we always visit Nana at work – we headed over to HIS work to meet the guys during their lunch break.  It’s always fun to show Kiran off, but it is very different with a bunch of guys versus a bunch of ladies!

After our visit with Papa Joe, we headed back to ChildServe for our genetics clinic with the doctors from Iowa City.  This was a follow-up they requested from when he was born.  Kiran has had a specific test – the one for DiGeorge syndrome – and the chromosomal microarray – but no further testing.  DiGeorge, as many probably remember from my relieved post early on, was negative.  The microarray showed a small deletion that only affects one gene.  The genetic doctor and counselor I met with today both feel this deletion does not explain Kiran’s (for lack of a better term – ugh) abnormalities.

The genetic doctor examined Kiran, and he revealed no clues.  She said he just looks too normal.  She was hoping to see some features that would give her an idea of specific genes we could target for further testing.  At this point, she is not finding any syndromes that connect his three major abnormalities (heart condition, vertical talus (rocker bottom foot), and vision/eye issues).  I could have chosen to do a massive look at the genes – similar to the huge chromosomal test – but it wouldn’t necessarily give us any answers and may actually cause more questions.

After discussing some courses of action, they feel it would be good for Kiran to have a kidney ultrasound (sometimes vision issues and kidney issues can go hand-in-hand, though they feel it’s a long shot because if he had significant kidney problems, we would surely know with how much we have monitored him this past year).  Since it’s non-invasive and quick and can provide more information, I am all for it.  They also wanted his hearing tested medically again (we have followed up through the Early Access program but not at the University since shortly after birth).  And, they agree with our genetic eye doctor that a brain MRI would provide good information to help us get to the bottom of this – and, most importantly, provide us with a solid understanding of how we can continue to support Kiran and care for him best.

If all of these tests come back normal and fail to provide us any more genetic clues, they want to follow up with Kiran in a year to see how he is developing.  If something pops up (And I will be honest – mom intuition tells me the best bet will be in the MRI) and helps us find a path to follow, we will discuss more specific genetic tests at that time.

So – no answers today.  But we were able to discuss a plan I am comfortable with to move forward in hopefully providing answers soon.

I have done a lot of venting about Kiran’s medical team lately, and I just need to show some appreciation really quickly.  Thanks to a fellow heart mom, we managed to fall into the hands of who I firmly believe is the absolute best pediatrician in the entire universe – she also employs the best nurse in the entire universe.  Dr. J and Nurse R have been an invaluable part of our journey from the start.

As a parent working with them, I have always felt heard, validated, and advocated for.  When they don’t have the answers, they take the time to do the research, read, ask the questions, and follow up with me.  They take me seriously – not sometimes – every time – and they make sure I know that I am doing the best job possible caring for my son.

They read these blog entries, and instead of ever taking offense, they reach out to make sure I know they are here for me and my son.  They let me know that because of my experiences, they will change their protocol to make it better for parents who come after me.  They are learning and growing instead of getting defensive or angry when I have been upset by certain things along the way (Mind you, I have never actually been upset at them, though sometimes they may have perceived it so!)

And just now, without question, they are willing to give Kiran a prescription for Nourish, which is a real food full nutrition formula blend that can go through the g-tube.  If my insurance will cover it, it will save me a lot of time and headache trying to blend Kiran’s food every day and trying to make sure he is getting everything he needs.  They are learning about the blenderized diet along with me, and the fact they have been willing to show so much support from the beginning is huge (I have heard from so many in my fb group about blenderized diets that many medical professionals continue to be “formula pushers” and are resistant to feeding real foods through feeding tubes).

We are lucky to have them on our team, and amidst so much frustration as of late, I just wanted to make sure I took the time to acknowledge that.

 

 

I hate when I feel appointments are a waste of time.  Between medical and therapy appointments, Kiran and I sometimes have exceptionally busy weeks.  The next two are prime examples.  Yesterday was the only appointment-free day until Monday, Dec. 19th (weekends excluded).  Makes this morning’s appointment that much more frustrating, especially when it took 2 1/2 hours from our day.

Nothing could be discerned from the swallow study.  The speech therapist and I both worked with him to drink from a couple different sippy cups, his bottle, and take bites from a spoon…He still only gave us three small swallows to see.  We were able to see his airway closing – doesn’t mean it always does, but does mean it is capable of doing so.  That’s about all we learned.

The talk I had with the speech therapist was both fruitful and frustrating, however.  She is the first speech therapist I have met at this hospital that I actually found helpful.  I learned it is very common for heart kids to have heart surgery, really take off on their oral feeding, and then backtrack.  Sometimes it can be behavioral – other times it can be due to discomfort.  She said the sudden drop off of his desire does make her think there may be something going on to cause him discomfort.  It may not be aspiration.  It may be.  I sometimes wonder if it’s simply his acid reflux.  Or he had a sore throat at the time and is just incredibly stubborn.  Could be any number of things with this child of mine!

When I expressed my frustrations (as I have here before) about the medical team being so quick to put a g-tube in but seeming to have little to no plan or even knowledge of how to eventually get it out, she stated so many parents share this frustration with me.  (Sidenote: She also said most are not able to express it as eloquently as I did…guess I’ll keep writing….)  She said it was written in my records that I should have been recommended outpatient speech therapy services through Mercy after the g-tube placement surgery.  This was news to me.  She said her job to get a child off the g-tube starts the day it is placed.

This is beyond frustrating to me.  And I could tell it was to her too.  She said so many doctors are so focused on getting these kids through the surgeries they need and just assume feeding issues can be handled after.  But she was saying she could have been helping us all along with ways to practice, to not develop oral aversions, etc.  When I did give her an overview of how we handle feedings at our house, she said it seems, even without the guidance, we are doing everything we should be doing to help him have a positive experience with food and practice skills.  Still.  I hate that feeling of falling through the cracks yet again on this medical journey.  It makes so much sense that this therapy could have helped along the way, and I wish I would have had that resource in place.

But.  Here we are.  We start from here.  She did say – given everything we have been doing with him and all the other information she has read about him – she feels he has a very positive prognosis of being able to eat completely orally again.  She said the Childserve feeding team is amazing.  All of this was good to hear in the midst of a very frustrating conversation.  I do have her number and email address, so I can find her in the future if we choose to do any follow-up on this here in town.

This is probably going to be my second most important cause.  CHD awareness will always be number one, of course, but feeding tube awareness will be a close second.  It was a medical necessity for Kiran; I have no doubts about that.  But had I known early on in our journey everything I know now, I would have advocated so much differently for him.  And you better believe I will share that knowledge with any parent going down a similar path (provided they want it…I tend to not be a throat shover).

One appointment down this week.  Four more to go.

 

I want to give a brief update on Kiran – the fun kind – before I have to give all the medical updates in the weeks to come.  We have some big appointments coming up.  Tomorrow is a swallow study to make sure there isn’t a medical reason (aspiration being the big one) behind him not wanting to eat much orally.  Thursday, we have a genetic follow-up; we haven’t seen genetics since birth.  I just got off a 45 minute phone call updating them on Kiran (This was after being on the phone for an entire hour with my insurance company this morning regarding his synagis shot for the month of December…the joys of this medically complex life).  Friday, we head to Iowa City again, this time for his lung perfusion scan.  And next week Friday – finally, finally! – we have our feeding evaluation at Childserve.  Big weeks in the life of a little man.

Feeding.  I love giving Kiran real food through his tube.  I am currently blending my own, and we are still in transition (so we add new food groups every so often, mixed in with his infant formula still), but it seems to be going pretty well.  I especially love syringe feeding.  It makes me feel more like a normal mom feeding her baby.  The pump was necessary – and it was fine – but it felt really clinical and mechanical.  I much prefer sitting down with him and feeding him slowly.  It’s more interactive, and it does wonders for this mama’s brain.

Kiran is now able to tripod sit for over a minute at a time!  This is huge; we have been working every day on his core getting stronger, and he is doing wonderfully.  He also willingly kicks his legs up toward his face and rolls to his side – and he can now even find his toes with his hands most of the time.  These all seem silly, likely, but to us, they are a HUGE deal!  Progress is being made!  Probably most exciting of all, he is starting to sometimes willingly put some weight on his feet.  Anytime we used to try this, he would lift his legs and refuse to even put his feet down.  Again – progress.  And he’s chatting more and more – his consonant sounds started a few weeks ago – love his babbling so much.

The upcoming appointments feel overwhelming.  I seem to drag my feet when it comes to the medical stuff lately, because I am just enjoying the more normal stuff…the time at home…even the therapy appointments.  But it’s all necessary.  Hoping for many (good) updates in the days to come!

Productive and validating visit to U of I pediatric cardiology today. Got to see two familiar faces from even before Kiran was born and got to meet some fantastic new people as well. As always, cherry on the top is visiting my aunt who works (in a different area) at the hospital and loves showing her great-nephew around. (Let’s be honest: He is pretty great!)

Lung perfusion scan will be next Friday. As long as these results look good, we have been given a cardiology schedule of … EVERY THREE MONTHS!!!  Dr R said this, and I literally said “Wait. Are you sure!?!  Three months?!?” (The longest we have ever gone is 6 weeks and that was a brief period). If all is well, we go back to see him in early March. I am still wrapping my head around this. 

We have been given the green light to wean Kiran off his furosemide (lasix). We can drop off to one dose a day and watch for any changes (fluid retention – so puffy eyes or distended belly). If that goes well, in about a week, we can stop giving it to him altogether and see how he does! Dr R believes he will do quite well with the wean. 

Overall, he looked really good. We didn’t have to do any tests today – no EKG, no x-ray, no echo – Dr R said he would really love to see his heart, but it wouldn’t change anything medically right now. So we will get information from the scan next week, and we will have an echo and ekg in March. 

All in all, it has been an emotionally stressful and exhausting couple of weeks as I have furiously collected information, and Arif and I have sorted through it to make this really important decision.  I had no idea what I was getting into, when I simply started questioning the anesthesia protocol for the lung perfusion scan put in place by most hospitals around here.  I didn’t know advocating for Kiran would ultimately bring us here. But. Here we are. 

And today, we rest in the peace that has come, knowing we have – without a doubt – made the right decision for our son. 

I am not someone who deals well with change.  Good or bad, it causes a lot of anxiety in me – not to mention so many emotions.  A big change has been in the backs of our heads for the past few months, and we are beginning the process now.

I will not get into the specific reasons why we have made this decision, for this blog, while being a megaphone for CHD awareness, will not be used as a megaphone for other issues at this time.

We are moving Kiran’s primary cardiology care to Dr. R. in Iowa City.  We have an appointment with him tomorrow and will discuss with him this transition.  We feel very strongly it is in Kiran’s best interest, and he will receive the best care there.

I want to say this: I am very emotional about this.  It is a BIG deal.  Dr. M. has been an amazing cardiologist – he has been a constant in Kiran’s life since birth.  He has talked me off the ledge many times this past year, and he has been an excellent part of our medical team.  We have loved working with him, and we are sad to be saying goodbye.

But – as life has calmed down – as we have taken an objective look at the past year – all we have experienced, all we have learned, the medical advice given from various sources – we must do what is right for Kiran.  Every decision we have made throughout his entire life has been the very best decision we could make at the time, with the tools we had, with the information we had, with the capacity we had….

We will continue to do so.  We will build up our arsenal of tools.  We will gather the information from our growing body of sources.  We will hopefully gain greater capacity as our rockstar son continues to move forward in his journey with CHD.

This is absolutely an angry post.  I have had the most frustrating, stressful day ever.  I have been on the phone way too frequently with medical people trying to figure out the best course of action for Kiran’s upcoming lung perfusion scan.

If you are reading this blog and you are a member of our medical team, I promise I am actually not talking about you.  But, you may want to hear this (and you may want to make sure everyone working in your office is reminded of it): MY SON’S HEALTH AND WELL-BEING IS NOT A FOR-PROFIT ENDEAVOR.

Let me say that one more time, in a more clear way: I don’t care if you want to make money having my son’s procedures done at your facility.  In fact, if I get the feeling that is the only reason you want it done there, it leaves a bad taste in my mouth and makes me want to go anywhere but there.  My number one priority is making the best decisions, with the information I have, for my son to be as healthy and safe as possible.  As someone in the medical profession or working in a medical office, this should be your number one priority too.

I will not stand for being made to feel embarrassed about doing what is best for my son.  I will not stand for being made to feel badly about making phone calls on my own to other facilities to find out their protocols for a procedure that can have a significant impact on my son’s health.  I will not be bullied into doing something I don’t think is safe for my son.  I have fought hard to keep him alive and healthy and happy for over a year, and I will never stop that fight.  In fact, I am now armed with more knowledge and more experience…and today, Mama Bear had to wake up.

I will never stop fighting for my son.  Ever.

Despite Kiran still battling a cold/cough combo, we had a really good day today.  The type of day when I finally make it out of bed before he does, which means the dishwasher is empty, the bottles made, and my breakfast half eaten before he wakes up.  The type of day when I decide it’s a really good idea to coordinate Kiran’s morning nap with a nice long walk.  When he takes a long afternoon nap, and I am able to not only shower and fold/put away two loads of laundry, but also have time to relax.  When, during his pump feeding session this afternoon, we snuggle and read several books together.

It is one of those days when I am able to realize that I am in charge of my own story, just as Kiran, in many ways, is in charge of his (and certainly will be, completely, someday, sooner than I’d like to think).

We have a lot to celebrate, and we are approaching my favorite time of the year.  I love the holiday season, and I am looking forward to so much wonderful time with family and friends and my darling boy.

I don’t want my story to revolve around feeding frustrations.  I don’t.  I plan to continue to try new things – and once he is a little more recovered, will be moving forward again with the blended food diet transition – and I plan to move forward with Childserve (hopefully) once he has his feeding evaluation.  I will continue to offer him food – a variety of food – but I don’t want it to consume our days.  I don’t want to remember Thanksgiving and Christmas 2016 as a time of frustration.  And I don’t want to give Kiran a complex about food.  I want him to enjoy it.

Surprise, surprise – He refuses to operate on my timetable.  He’s writing his own story.  I could fight it – or try to – but it only makes my story harder.  More frustrating.  Sadder.

I want him to have days full of love and books and walks and laughter and friends and – yes, food – and snuggles and kisses and … did i mention love?  We get to celebrate his bravery and strength and LIFE, and I don’t want to lose sight of that inside a daily frustration about how I feed him.  I’m working to let this one go.  It will be what it will be, and I can only do so much.  So, I’m choosing my story.  It’s a story full of more good days like this, with so much to enjoy and celebrate.

He will start eating orally when he’s ready … or … he won’t.  Either way, he is Kiran, and we are writing our stories together.  I’m thankful.

There is no such thing as an expert in grief.  For a brief moment this morning, my brain tried to convince me that it is something I have gotten a handle on.  I have had a lot of experience with different types of grief.  I have lived with grief for fifteen years.  And four years.  And just over one year.

This morning, I wrote a post on facebook, meant to encourage others in my life who are living inside grief.  Who are currently being ripped apart and changed at the very core by grief.  I wanted to say things like: There will come a time when you will laugh more than you cry, when you remember your loved one/that time in your life/those dreams you once held dear.

It may be true.  For me, when I think about my brother, who died 15 years ago on this very day, I DO laugh more than I cry.  I still shed tears for him, but it is the exception now, rather than the rule.  Instead, I think about the time I had with him, and there is so much to laugh about inside our memories!  His loss will always hurt, and I will always wish he was still here, doing life alongside me.  But 15 years is a long time to live with grief, and you get to a point where the change in you feels more…normal.

But being practically unable to hold back tears at the end of a library story time session with my son this morning, I was reminded that, inside this kind of daily grief, it may not be true.  Perhaps I will always shed more tears over the loss I feel for the life I wanted – not only for myself, but for my son.

I love library story time.  It has been one of my favorite nannying activities for ten years.  I love books and songs and socialization, and it encompasses all of those things.  When I thought about myself as a mom, I thought of weekly library visits for story time.  It was not a dream that could come to fruition, until today.  Until we got the okay to live our life, as if our son is healthy and normal.

But he’s not.  And for some reason, a story time they say is designed for ages 6 mos-18 mos was full of nothing but toddlers.  Every other kid in there was walking around, pointing to their body parts, saying words….while Kiran was in my lap.  He was happy.  He was oblivious.  He was clapping his hands and watching all his new friends.  He was enjoying himself, and I was fairly successful at quelling the panic I felt inside over picking the wrong story time to sign us up for.  Until the end.  When the story time lady blew bubbles.  All of the other kids were squealing, popping bubbles, walking through them….and I couldn’t even tell if Kiran could SEE the bubbles.  And it broke my heart.  And I wasn’t sure I was going to be able to make it to the car before the tears came.  I did, but just barely.

I am learning a new type of grief.  I have experience in grieving loss by death.  I am thankful – beyond thankful – I am not having to experience that type of grief now.  I am thankful to have Kiran still here, living life alongside his mama.  But this grieving of the loss of a life imagined – of dreams dreamed – is messy business.  And sometimes, I’m going to sit in my car in the library parking lot and cry my eyes out.

CHD sucks.