Merry Christmas

I am the only one awake at my house. It is 6 am. I woke up feeling emotional. I. Am. So. Blessed. 

I have said it a million times: This has been a hard year. An extremely excruciatingly hard year. I have always been an emotional person; I feel things very deeply. Every single emotion, good and bad, has been magnified ten times since having my son. 

I never knew I could hold so much love in my heart. I never knew how terrifying loving someone could be. 

He’s with us. Sometime within the next hour, I will hear him rustle and wake up. His cries will come through the monitor, and I will go pick him up. Hold his snuggly body. Smell his sleepy breath. Feel his tiny hand grasp and pinch my neck (his latest obsession – ouch!). Hear his voice saying good morning in that baby language we will never understand. 

There really are no words for what I am feeling this morning. Blessed is an understatement. Thankful doesn’t cut it. 

At the Christmas Eve service last night, the pastor talked about moments that change us. It’s those Before and After moments, the defining moments of our lives.  I’ve had so many this year. I am not the same person I was going into 2016. I wouldn’t have it any other way. 

Reach out to the people you love today. And tomorrow. And the next day. Tell them you love them every day. Show them. Act out your love. It’s the most important thing. 

This Bible verse hung prominently displayed in my childhood home: And now these three remain: faith, hope, and love. But the greatest of these is love. 1 Corinthians 13:13. 

Love really is the greatest of these. Thank you all, for loving my son, even if you haven’t yet met him. Thank you for loving my family, for following our journey. Every word of encouragement, hug, message of support, has come at a time when it was needed most.  You have all held me up throughout the darkest moments of my life so far – and the most joyous. 

From my family to yours – Merry Christmas. I love you and cherish you, my dear family and friends. 

Lung Perfusion Scan Results

I am normally much quicker at blogging about results that come in – I know many are quite invested in Kiran’s story, so I apologize.  While I have yet to get a phone call from our cardiologist (I assume because of the holiday season), the test results showed up on mychart on Friday.

I would like to think I have gotten quite good at reading medical paperwork.  Kinda.  Here’s what I know: It’s not much different from the prior scan.  This is good news.  The percentage of blood going to the left versus right lung is 52/48 – this is good.  We want those numbers to be as close to 50/50 as possible, and given Kiran’s anatomy, this is an incredible ratio!

I was not aware Kiran has a “decreased perfusion in the right upper lobe”, but apparently this is “similar to the prior scan” so I’m not concerned.  This basically means less blood is going to the right upper lobe than is going to the left upper lobe.  However, all other lobes are relatively similar (They essentially looked at the top third, middle third, and bottom third of both left and right lungs).

The Impression states as follows: “Grossly stable lung perfusion scan with decreased perfusion in the right upper, with a right-to-left lung perfusion ratio of 48% to 52%.”  I like the word stable.  A lot.

I doubt I will hear anything different from our cardiologist – This was a good test result.  He is stable, not much has changed since his scan in September, and we will have another scan in March to continue monitoring his bloodflow.

Different

It has just been one of those weeks.  There isn’t really a discernible reason for it.  I have just been emotional.  It’s been busy lately – it has really been a pretty difficult month overall – complete with big decisions and big appointments mixed in with all the daily stuff.  Life has been busy, and I haven’t had many breaks.  I was explaining this to someone recently (maybe I even wrote it already on here?): It’s not really that I need a break from Kiran.  He’s pretty great, and he helps remind me the reason for all of it.  But I need a break from my brain while caring for him.  When I am with him, it’s like every ounce of brain power and heart goes into him.  His appointments, his feeding, am I doing this right, I need to research this more, we better work on physical therapy exercises….

It is too bad you can’t actually take a break from your own brain, but at least when I have those breaks to get out on my own, with my husband, or with friends, I can distance myself a little bit from the constant whirling and worrying.

For some reason, even though Kiran is stable heart-wise, I have been very emotional around the year we have had.  Others in the heart community have gotten tough news recently with their older kids – time or almost time for another intervention – and it has reminded me that this is never done.  That being said, I have to find a balance and get past this “waiting for the other shoe to drop” mentality I currently seem to be stuck in.  Sometimes, despite all we have been through, I just feel like it’s too good to be true…that surely something is going to go wrong with this poor little turkey’s heart.  That it can’t be that easy.  I know – sounds weird – the kid has been through open heart surgery.  He’s just done SO WELL, and it seems like it can’t be real.  This is making waiting for his lung perfusion scan results – which we still haven’t gotten – very difficult.  It is amazing, really, the nightmares my mind can concoct.

I am hopeful this weekend will help.  In true whirlwind fashion, we are leaving for Kansas City tomorrow after our feeding clinic evaluation in the morning.  This will be our first overnight trip with Kiran that has nothing to do with medical appointments.  It just occurred to me this morning why Kansas City at Christmas time felt right to me.  My parents and I went to Kansas City at Christmas time in 2001, just a month and a half after losing my brother.  It was something different.  We needed things to be different – to feel different – because we were so different.  Everything was different.  I feel that way this year.  We came into the year having no idea how it would go.  We didn’t know if our son would be here to celebrate Christmas with us or not.  And even though he is, our family needs healing.  This year has changed us significantly, and we need a space to be different in, together.

The Scan

The scan that started it all. When I initially started asking questions about sedation protocol for the lung perfusion scan, it opened up a can of worms I had little idea even existed. It became the catalyst for stepping back and examining our care choices for Kiran. Ultimately, it helped us in our decision to move his care back to Dr R in Iowa City. 

We continue to feel confident we have made the right decision. 

Today’s appointment started with the most unpleasant thing – IV placement. For whatever reason, Kiran has always been a difficult poke. It took them two tries, and Kiran was VERY upset (and rightly so). I was holding him and the child life specialist, Arif, and I were all trying our bags of tricks to calm him, to no avail. Kiran has never been easily calmed. This mama almost burst into tears as well, but we all made it through. 

He gets MAD, but he also gets over it pretty quickly. He even gave the nurses a little smile before we headed to nuclear medicine. 

Even though we were told the sedation protocol was to use it at Kiran’s age, they were willing to try first without. AND KIRAN ROCKED IT!  They had to do four pictures, two minutes each, and he was still for all of them. We only had to try once, and no pictures needed to be repeated. 

After all the craziness and drama around this procedure, I am so so so thankful Kiran was his usual easygoing self. 

We are lucky. 

And now, we wait for the results. We will have the test results in mychart by this afternoon, and we should get an explanatory phone call from Dr R by early next week with what they mean.  Our hope is that nothing has changed. 

So glad to have all of these medical appointments behind us. Next week is a week full of therapy appointments. Onward!

Genetics

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.

And a Shout-Out

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.

 

 

Swallow Study

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.

 

Gaining Strength

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!