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.

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.