We spent some time with our son. Everything is looking good and as expected at this point. We have a couch in a sleep room one floor above the CVICU where we will try to get some sleep tonight. The nurse encouraged us to really use tonight to get some rest, because this is the night he truly won’t know that we are not with him. It was hard for this mama to leave his side, but I know I have to take care of me in order to take care of him….and I won’t want to leave his side for sure once he’s more aware.  I am sure I will be walking down to visit him at least once in the middle of the night. 

What. A. Day. Kiran is strong. His saturations were at 98 and 99 the whole time we were at his bedside. It is all just so unreal. So much of all the feelings today.  

Dr. Hanley was able to do the full repair!!!  Everything went well. They found and patched all six collaterals. He felt so confident with how things were looking, he didn’t even do the flow study … He just moved forward and did the repair. 

Normal heart anatomy pressures in the pulmonary artery is around 20. With this heart anatomy, after the repair, they shoot for a pressure below 50. Kiran is at 23-24!!!

They were able to close his chest. Dr. Hanley said we need to take recovery slowly with him. His right ventricle is very oversized due to the high blood pressures he was experiencing for many months longer than they normally like (normally Dr Hanley likes to do this at 3-4 months old; Kiran is 10 1/2 months old today!)

We could not have asked for better news, and we will get to see our baby sometime in the next hour or so ❤️❤️❤️

Thank you for all the prayers, encouragements, thoughts, vibes … keep them coming … Recovery will be a hard road, but we feel so lucky to be stepping out on this path!

We still did not get the information about whether they put in a shunt or did the full repair. We have to wait to speak with Dr. Hanley. However, it sounds like that will happen anytime in the next hour or two. They anticipate Kiran being out of the OR by 8:00!!! 

I am thrilled to announce I have another boring update!  Though I was hopeful we would learn whether the full repair could be done, they are not at that point in the procedure yet. However, Kiran continues to do well, and they are continuing with the surgery. 

For those who follow and aren’t on Facebook:

This is the long part of the day. No details – just broad updates. We just got our third phone call since Kiran went into the OR. He continues to do well, and everything is going as planned. 

I am so thankful the updates are more frequent than we were originally told. I couldn’t make it four hours. After each positive update, I enjoy a brief period of calm. Then my anxieties amp up until I can hardly stand it … Then comes the next call.  It’s a roller coaster I am doing my best to ride gracefully today. 

A volunteer gave us a tour of the CVICU where Kiran will go immediately after surgery. She also showed us the step-down unit and a few family lounges. I came back thoroughly overwhelmed. It is not that I was oblivious to the long road to recovery – it is just that it is easier for me to take things one step at a time. This is surgery day. I need to take this in, and then I will be able to steady myself enough to take the next step. 

My baby is rocking it. He is my hero. 

We just had a chance to talk with Dr. Hanley.  He is about ten minutes from going into the OR to start his part of the operation.  Everything is going well with Kiran so far.  They have six collaterals to correct – so six patches to do.  They will then do the flow test to determine if they will be putting a shunt in or doing the full repair on the heart.  Dr. Hanley said there seems to be good blood flow into the lungs, and that generally means they can do the full intercardiac repair!  We couldn’t help it – we walked out of that conference room with big smiles on our faces.  We have so much hope and so much confidence in this surgeon.

And he was wearing his Keen on Kiran wristband.

We gave kisses and watched our son being carried toward the operating room about an hour ago.  I still don’t know how I managed to hand him over.  He went with a picture of mom and dad, a prayer bear passed onto us by another TOF heart kiddo, and his brave, fierce lion lovey.

And his mom’s heart.

Anesthesia told us the first couple of hours will be putting him to sleep and putting in the many lines they need to give medication, monitor his blood, give blood, etc throughout the long procedure.  Around 10 or 10:30, Dr. Hanley will find us and talk to us before going in for his part of the surgery.  After he is done, it will take the anesthesia team another couple of hours to wrap up and then they will come talk to us.  About 45 minutes to an hour after that, we will finally get to see our boy.

It was reiterated this is a long surgery.  The soonest they anticipate being done is 7 p.m.  So many factors, of course.  Our OR nurse said she has worked a case that went until 6 a.m.  It all depends.  Trying to settle in for a long day of waiting.

We were also told, given the complexity and length of this surgery and his age/size, it is likely they won’t wake him up until the weekend at the earliest.  Again, a lot of factors play into this – maybe Friday, they will decide he is ready to start waking up.  Or it could be a week or two from now.

It’s the uncertainty, the unknown, that bothers me the most.  If only it could be clear cut.  This boy is teaching me so much about going with the flow of life and just taking it one challenge – one joy – at a time.

Please keep praying.  Keep sending messages.  Keep sending wristband pics.  Keep on being #KeenonKiran.

It seems we always want time to bend according to our wishes.  At times, we hope the clock will move forward.  We are stuck in a boring meeting, we are excited for the weekend’s activities, we look forward to a certain season.  And at other times, we beg the clock’s hands to tick more slowly.  We are on vacation, we are reveling a moment with family, we are anticipating a day we do not want to come.

When we were discharged after Kiran’s cath on Friday, I was looking forward to the days ahead.  It seemed so much time existed in which to enjoy him.  It’s not over.  But today, driving back from the ocean, enjoying his backseat chatter, I realized: Tomorrow is it.  We have tomorrow.  And then, the next day … Well, the next day, we find ourselves living inside a day that will mark a Before and an After.  No matter the outcome of the surgery on Wednesday, it will be a bookmark in the story of our lives.

And I am just not ready.  I know a time doesn’t exist in which I could ever possibly be ready, but I find myself wanting to plead with the clock.  Slow.  Down.  I want more of this chapter.  I’m not sure I can handle the one that comes next.

We met with a cardiothoracic surgeon’s physician’s assistant today to go over the broad surgical plan for Wednesday.  First of all, let me say this: I continue to be impressed with everyone we meet at this hospital.  This woman was amazing.  Like Dr. Hanley, she was kind, patient, and intelligent.  Her explanations were clear and concise, and she took her time answering all of our questions.

First of all, she said there were no surprises.  His case, though complex (as they all are) isn’t anything they haven’t seen before.  She feels the surgery will fall somewhere in the middle as far as length of time.  Some surgeries apparently last until 5 a.m. the following morning – she felt Kiran’s surgery would be finished somewhere in the 7-10 p.m. timeframe.  Mind you, we check in at 6:30 a.m. on Wednesday, so this is an incredibly long day.  And, of course, she can only guess – so many factors play into how long the surgery will take.

As I stated before, Kiran has 4 MAPCAs.  She explained that, although his first cath only showed 2 MAPCAs, (not 3 as Dad thought) it is likely it is because the other two were too small to detect at that time.

It looks like he will need anywhere from 4 to 8 patches.  They will be slicing open the narrow arteries and essentially sewing in patches to create bigger arteries.  This will encourage heavier blood flow which will encourage his tissue to grow.  She said each patch takes approximately 2 hours.

She also went over all the possibilities of how Dr. Hanley will approach the surgery.  They have their big cardiac conference on Wednesday morning, so they will finalize his surgical plan before going into the OR.  We will know the specific plan that morning.  I am focusing only on the plan to go into the chest, address all of the MAPCAs, and do the full intercardiac repair.

The biggest thing really to take away from our meeting with her is similar to what Dr. Hanley said (only with the updated cath results from today): No surprises.  His anatomy is something they have seen many times.  She did not look at his case and think “Wow, this is going to be a really long, difficult day.”  She feels it will be middle of the line for time.

I do not say these things to minimize the risks.  There are serious risk possibilities.  This remains the most complex surgery they do.  But it is so encouraging to hear these things.  I am so glad I didn’t hear “He’s inoperable.” or “He’s the most complex case we’ve ever seen.”  I will count my blessings and hold onto all of this fantastic hope we have been given these last two days.

Kiran has proven, yet again, he is a fighter.  He is strong.  With Dr. Hanley’s hands and Kiran’s soul, we have a pretty powerful team.  I’m certainly rooting for them, with all of me.

5 days until surgery.