It seems we were given misinformation yesterday. If everything continues to go as it has been, we will be discharged this afternoon!  

Kiran has been such a trooper!  His oxygen saturations have been normal, he has been relatively calm, and he is now tolerating a feeding through his g-tube. He has been awake through most of recovery, but, despite not eating for just over 12 hours, he has been resting quite well. Now that food is being pumped into his tummy, he is fast asleep. 

We met with one of the surgical physicians assistants, and she was fantastic. We went over the surgical procedure in broad terms. I will try to update with more details about that later tonight when I am not typing on my phone. 

X-Ray will be coming around two to get a chest X-Ray on file for his surgery next week. After that, they want him to maybe rest and be monitored for another hour or so….and then we head to our California home!  Looking forward to a restful long  weekend ❤️

My heart is still pounding!  The doctor from the cath lab just came and found us in the waiting room. We had no idea what he was going to say as he took us into a conference room … 

The news, as the title states: He is DONE! The cath didn’t even take two hours!  Incredible. 

He has four MAPCAs. My dad recalled him having three at his last cath so his body has created a new one in the past five months. (Two of the arteries have high blood pressure. They may have caused some damage to the lungs but not enough to be concerned about. He also stated there is about 3x the blood going to the lungs as there is going to the rest of his body. This doesn’t necessarily mean much, other then he was impressed he has gained weight so well. 

We are already with him in recovery. Thanks for praying. 

Kiran is in the cath lab. I was allowed to put a gown on and go in until he was put to sleep. Not an easy thing to watch, but I was so thankful to be able to sing to him. 

It felt like a monumental moment.  Waiting in the waiting room, until 45 minutes after our scheduled appointment time (Because, in my mind, you arrive early to meet with a surgeon.  He is important enough – he doesn’t have the time to wait for us, but we will wait all day for him.) – I was so nervous and excited to meet the man who will operate on my son.

We were not disappointed.  I wasn’t kidding – we were in the presence of greatness this morning.  Dr. Hanley was a confident, kind, patient man.  He was excellent at explaining the procedure and took the time to answer all our questions.  We gave him a Keen on Kiran wristband, and he wore it while letting us take a picture while holding Kiran.

So many encouraging things came about during this meeting.  First of all, being impressed by Dr. Hanley gives us even greater confidence in him.  Secondly, he said he didn’t see anything about Kiran’s anatomy he hasn’t seen hundreds of times before.  Thirdly, when I asked the question I was hesitant to ask – about common complications with this surgery – I found out there is only a 1% chance of truly bad things happening.  Obviously, this includes death, but it also includes brain damage and other severe situations – essentially, this 1% chance covers anything that would make Kiran worse off coming out of surgery than he was before going in.  1%.  It is amazing to me, because he also mentioned that, from 1-10, this is a 10 as far as surgical complexity.  This is the most complex surgery they do.  The fact he could say that in one breath, and tell me it is only a 1% chance my precious baby will be worse off after this surgery than before…. Wow.

I feel so lucky to be here.

I have been really quite impressed with everyone we have encountered so far at the Lucile Packard Children’s Hospital at Stanford.  Everyone is very approachable, kind, patient, and intelligent.  They are good at what they do here.  Kiran had the worst fit he has ever had during his entire echo (for those who don’t know, it was about a 45 minute ordeal) – and the tech doing the echo was able to power through and get all the necessary pictures in one shot!  AND she complimented us for being great at helping keep him calm the best we could.  Trust me – she was being gracious.  He was inconsolable (and I didn’t blame him – what a long couple of days it has been!)

We did learn some exhausting news about his cardiac cath procedure tomorrow.  We were told he was second case and would be starting around 12:30.  He was moved to first case, so his cath will start at 8 am.  This is wonderful news for him, because the fasting he has to do largely occurs overnight (no crabby, hangry baby during the day!)…but it means we have to be back at the hospital at 6:30 a.m. (We just left the hospital at 4 p.m. today so not much of a break).  Also, is it their policy to keep cardiac cath patients overnight, so the earliest we will be discharged in Saturday morning.  I made the assumption we would likely be discharged same day, because we were in Iowa City.  Again, this is all really best for him…it will just be a very long day tomorrow.  I look forward to the few days of quiet time with family and close friends before surgery day.

For those praying, sending good vibes, providing positive thoughts, meditating, or whatever way you are choosing to support us: I have a specific request: Please ask that it be possible for Kiran to have the full repair on his heart during this surgery.  They will be addressing his MAPCAs (major aorto-pulmonary collateral arteries) – This is the main objective of the unifocalization surgery.  Once they bring these arteries together to mimic the pulmonary arteries that didn’t form correctly, they will be testing the pressures.  If the pressures are lower than 50, Dr. Hanley will perform the full repair on his heart.  He will then have normal blood flow from heart to lungs and should have saturations at 100%!  If, however, the pressures are too high (above 50), the full repair will have to wait.  Dr. Hanley said oftentimes (I believe 90%) the full repair can be done in about two years.  Still, this would mean Kiran’s energy level wouldn’t likely change much, so his development may continue to lag.  We really hope for the pressures to be good, so we can move forward and address some of his other developmental delays.

We obviously still ask for prayers for peace, safety, steady hands…but add full repair to that list.  This surgery has the potential to truly change Kiran’s life in significant ways.  He will never be cured of his CHD – there will be at least one more open heart surgery to replace a valve even if we can do the full repair – but this will give him a pretty darn normal life.  And that is beyond exciting.

 

I. Am. Exhausted.  It’s that kind of exhaustion you feel all the way down to your bones.  It has been a day.

First of all, Kiran was awesome.  He had a few moments of fussiness at the airport (our flight was delayed a bit, and we went plenty early to have time to handle any snafus), but he was a total rockstar on the plane.  He slept for most of the flight and when he was awake, he just chatted happily and quietly.  I don’t know how we got so lucky to have such an easygoing dude, but I will gladly take it!

So.  There are two of us – and a baby – so imagine wrangling a huge bag (to check in), a good-size carry-on bag, a camera case, a briefcase, a backpack, a diaper bag, a stroller, and a carseat….thankfully, Arif was smart enough to buy a cheap cart with wheels and we also found the joy of the smart carte….Needless to say, getting on the hotel shuttle this morning at crazy o’clock was made a lot easier with the nice old gentleman helping us with our bags.  Of course, our checked luggage was overweight…by 6 pounds.  We managed to get it to 51 pounds, and the agent took pity on us.  Fun start.

TSA wasn’t as bad as I thought, but it did take some time.  We are TSA-pre so no line – thank goodness – but they had to meticulously check the carseat and Kiran’s premade formula and liquid medication.  Luckily, we didn’t have to argue to keep any of it.

So.  We finally get to board the plane.  We find our row.  We get all of our bags situated, and Arif finally gets the carseat installed.  Kiran is buckled in.  We are settling in.  I am finally starting to relax just a little….and the flight attendant comes and tells us we have to move.  Apparently you can’t have a carseat behind an exit row.  At this point, everyone is on the plane.  It’s boarded.  They have to find a couple lucky people (we had splurged and bought the extra legroom “comfort” seats – we figured we’d need the space) to trade us for regular seats….

Talk about stressful.  I really wanted to make an announcement that it wasn’t our fault – we weren’t the ones holding things up – the flight attendants really should know airline policy.  In fact, considering Arif booked on the phone with an agent from Delta, they should have known not to put us in that row.  To top it all off, as we are moving everything, I realize Kiran stinks.  Badly.  I was told I had to hurry … hm … you try changing a fussy baby in an airplane bathroom for the first time in your life while in the middle of a very stressful situation.

Needless to say, it took my heart a long time to start beating normally.  I will say this: the flight attendants BENT OVER BACKWARDS to make it up to us the entire trip.  They were very attentive and very pushy with free snacks and made sure we were well taken care of.  I applaud them for that.  I still plan to write a letter to Delta.  Now that I’m a heart mom and a HUGE advocate for CHD awareness, I seem to have a bug for this kind of thing.  I think it’s very important – given that safety organizations are now saying the safest way to travel with kids is to buy a seat and put them in a carseat – that all airline employees know the rules and regulations.  We really didn’t need the added stress today.

All of that being said, we kicked butt at the travel thing today.  We really did.  All in all, though exhausting, it went pretty darn smoothly.  Many things I feared didn’t happen – and the things that did were things I hadn’t even thought to worry about!  And another win – the rental car company gave us an SUV for the same price as the midsize car we had reserved.

Arif is out picking my parents up from the Caltrain station right now, and Kiran is just waking up from his nap.  I have things pretty well unpacked and organized in the airbnb house we are staying in for the next eleven days.  Looking forward to just relaxing for a bit and then getting everything ready for our big day tomorrow.  Next step: Lucile Packard Children’s Hospital.  Tomorrow, we meet the surgeon and go through our pre-op appointments.

 

 

I have been wanting to write, but I haven’t known what to write about.  How do you put into words literally dozens of different emotions swirling around inside you?  I have been in as deep of avoidance as I possibly can be, while packing and preparing for a trip I never wanted to have to go on.

Today, we are in single digits.  It is 9 days until surgery.  And sometimes, I feel like I can’t breathe.

I prayed, for the first time in years, this week.  All I could muster, while on a walk with Kiran, was saying (out loud, mind you): God, I don’t like Your plan for my life.  If you really have a plan, I don’t like it.  I don’t like Your plan.

And then church this week was all about God’s plans for our lives.  Of course.  I’m trying to listen.

When people say “God has a plan for you.” or “God has a plan for Kiran.” to try to be comforting, all I can think is: Okay, but we don’t know what that plan is!  What if His plan doesn’t coincide with my desires?  What if His plan is for my son to have a short life?  Or an even more difficult one with added complications?  What if we go to California a family of three and have to make the difficult journey home a family of two?

It is easy to say God is good when He does miraculous things on this earth.  It is easy to say God is good when you SEE the good.  It is a lot more difficult to say God is good when you watch your son struggling to slow his breathing after practicing sitting up for ten seconds.  It is hard to say God is good when you are making the all-too-familiar drive to the local ER.  It is hard to say God is good when you have to hand your son over to a surgeon …

Which is still something I cannot imagine having the strength to do.  I have been told enough by many how strong I am.  I agree.  I was forced into a place of strength.  I have found reserves of it inside me I didn’t know existed.  Love is a powerful motivator.  But I still think, in 9 days, someone will have to pry him from my hands.

Then I remind myself: By giving him to the surgeon to have this surgery, I am giving him a chance at life.  Yes, there are scary complications that can occur.  Yes, he could die.  But if he doesn’t have this surgery?  He will die.  It is a certainty.  It may not be tomorrow or a month from now, but his body will give out.

So.  I will cry.  I will hug him hard.  I will live with the tightly wound ball of anxiety pressing down on my chest.  And I will hand him over, so that his heart can hopefully be repaired.  And I will love him, recklessly.

We are in the ER. Kiran is okay. I am sitting in a room, waiting for Arif and Kiran to get back from x-Ray.  My heart hurts. I have to smile – laugh to myself a little, even – or I will fall apart inside my sobs. 

We learned how to change out the g tube this morning. It has been three months since Kiran had the placement surgery, so it was time for us to learn how to change it out – it is done every three months. The nurse practitioner explained the process, Arif watched, and I did it. It went beautifully. The only disconcerting part was how much stomach fluids came up out of the hole when I took the old tube out – I wasn’t quite expecting that much drainage.

So tonight, when we were driving from our first stop on our night out to our second stop, when the sitter called and said his tube came out, I thought – between the panic bubbles rising up my throat – ok, we got this. At least we know what to do now. 

Right. 

Because the tubing attachment got caught and the tube was yanked out, the hole was swelling. His crying didn’t help. Not only could Arif not get the tube in, he couldn’t get the smaller tube in either. I did call our home health nurse directly (we love her – I normally wouldn’t – sometimes you have to take advantage of knowing you’re one of her favorite families and just skip protocol), and her recommendation was not to waste anymore time and just take him to the ER. 

The ER isn’t the best place for him 22 days before open heart surgery. We didn’t have a choice. They had to use dilators to stretch the hole in order to get the tube back in. But it’s in. The x-Ray is to verify placement … It will be the second time this has been done today. 

He was in so much pain. The poor little man. We played his “magic song” – When I’m With You by JJ Heller – I laid beside him and sang to him and held him the best I could. It was hard. It’s always hard. 

I was overwhelmed already today. It pales in comparison to what my brave little man constantly faces, but the realization of all the things I still have to do before we leave started pressing down on me today.  So. Overwhelmed. Paralyzed. Fearful. I was in need of a night out. 

But all of that faded away – not a single bit of it mattered anymore – when we got the call from our sitter. When that little boy needs us, we are there. I wouldn’t want anybody else lying next to him, even when it’s the hardest thing to do, to watch him feel pain.  

I will rip my heart out for this kid, and I do, every day. I won’t stop. Ever. No matter the cost. 

This is the surgery Dr Hanley will be performing on Kiran. The first step will be to address his MAPCAs (major aortopulmonary collateral arteries). Dr Hanley generally does this surgery in the 4-6 month range, but because Kiran has been so clinically stable, he got the benefit of growing and will be 10 1/2 months old on surgery day. 

As with most things on our CHD journey, it is a double edged sword. Because he is older, his body has had more time to continue to compensate for his special heart, so he has been creating more and more MAPCAs, making that part of the surgery more difficult in some ways.  I would like to think it is also beneficial, in that Dr Hanley will have more arteries to choose from to make better pathways from the heart to the lungs. 

If this part of surgery is successful and the pressures in the newly formed arteries are good, a full repair can be done on Kiran’s heart. This means we would hopefully not have to have another open heart surgery in the next several years – perhaps ever – depending on how his journey plays out. 

What it doesn’t mean is that Kiran will be fixed or cured. Full repair is misleading.  CHD is a lifelong journey. Kiran will always need to have checkups with a cardiologist and will likely continue to need help with feeding and development. There will be cardiac catheterization procedures in his future. We may not be able to avoid other open heart surgeries. We just don’t have the answers until we keep taking the next steps. 

But our medical journey will not end on surgery day. It will just be beginning. This is a big step, but it is just the next step for Kiran and our family. 

This video is a great look at the surgery that will be performed, and it really helps the non-medical mind understand his condition a bit better. 

https://www.youtube.com/watch?v=2QKwmy5BfUA

Static: lacking in movement, action, or change, especially in a way viewed as undesirable or uninteresting.

Being stuck in a state of limbo has been a consistent theme in my life.  I always have to write about it.  If I were to look back on the many diaries, journals, and blogs I have written in, I am sure I would find at least one entry/post about limbo.

I hate being static.  I hate waiting.  I am the most impatient person on the planet.

We have 27 days until surgery.  The paradox I am stuck in is I want time to   s l o w    d o w n while simultaneously wanting surgery day to be here already.  My brain knows from the experiences I’ve had in the last year that, though surgery day will probably bring about the most significant changes thus far, it may not bring about the changes – or the answers – or the life – I desire.

I always get so impatient and so anxious because I feel like this next appointment or the g-tube placement or finally getting a surgery date will somehow make this whole “life with CHD” thing better….

I don’t want to get stuck thinking this surgery will be the cure-all.  I know CHD is a lifelong condition, and I know Kiran will never be cured or fixed or healed.  And we don’t even know if they will be able to do the repair on his heart until they are in there doing the surgery.  If they only address the MAPCAs and are unable to repair his heart, I have been told we may not see a significant change in Kiran’s energy level.  It is heartbreaking to think about.

How do I stay optimistic but protect myself from great disappointment?  How do I live inside this moment I have with him while impatiently waiting for our trip to California?

Life just feels put on hold, and it’s hard to make it feel any other way.  27 days will go by in a flash – and yet surgery feels like an eternity away.