We are still trying to get a handle on Kiran’s discomfort. He had a rough night – I was up comforting him often and didn’t sleep much.  During rounds, we decided to put him back on around-the-clock Tylenol, continue with the Ativan and follow a very slow weaning schedule, and add fiber to his formula to help him with his tummy issues. We will also try to feed him some yogurt today for his tummy. 

Depending on how all of that goes today – and if we can at least start weaning the Ativan tonight to see how he handles it – we may still be discharged tomorrow. It is also possible we will be here another day – or two – beyond that. We want to make sure his pain and discomfort is being managed, and ensure we feel comfortable taking over the management. 

Overall, he’s doing great. We are seeing more and more playfulness and plan to take him for a walk again this afternoon. He hasn’t had any more episodes of high heart rate, so it seems that was just a fluke. 

In some ways, I am so ready to bust out of here. In other ways, I am completely fine if we end up staying an extra day…or more. Like our new neighbors on the floor said: We want to go home, but we don’t want to have to come back!

We finally got a bed on the floor tonight!!!  Plan is to try to discharge on Friday and possibly fly home Sunday!

One week post-op celebratory wagon ride 

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The electrophysiologist just stopped in. He believes Kiran’s episodes were just sinus tachycardia. This means the heart was beating normally (no arrhythmia) but just faster. Still unsure why. Still could be an arrhythmia. Plan is to watch him over the next few days while we are here.  

New plan: no echo today. There will be a discharge echo done before we go home anyway. I guess they did 2 EKGs overnight, and they want to have the electrophysiologist review them and possibly look Kiran over.  He hasn’t had any other episodes, and no one seems concerned. It would be very abnormal for him to develop an arrhythmia this many days after surgery. We may never know what caused these episodes, but they are ruling out what they can. 

The plan is still to go to the floor later today, unless something changes. 

The lung perfusion scan came back about as perfect as can be: it was 53%/47%  They want it close to 50/50. I’d say Kiran continues to be an overachiever like his mama. 

We are one week post-op!  We plan to celebrate later on with a wagon ride through the hallway. 

Smooth sailing. That is what I have been thinking about Kiran’s recovery path. Nothing alarming. Model patient. 

We were about to be transferred to the floor. As in, our nurse had just made the phone call to the doctor about Kiran’s new development as the team to do the report for the transfer was filing in around his bed. 

For no discernible reason, Kiran’s heart rate jumped up to the mid to high 180’s (his normal, while calm, is 120’s/130’s). He was calmly lying in bed, awake, but for 20 minutes at least, his heart rate stayed that high. It was his first episode like this, and he hasn’t shown any other reasons for it – no fever or infection – and heart rate came back down to normal without intervention. 

Needless to say, we didn’t get to go to the floor last night. We did get the luck of the draw and were moved to a more private room in the CVICU (I’m not sure I mentioned – this whole time we have been in a large room with several other patients – it can be stimulation overload in there at times). 

He rested well overnight, but had one more heart rate episode around 10:20 or so. He was fast asleep, and his heart rate jumped up 30 points (to the 160’s this time). They did a 12 lead ECG (He has 3 leads monitoring him at all times but 12 gives them a better look at what his heart is doing). Everything looked normal. The plan is to get anther echo today to see if his blood flow is looking like it should. We won’t be sent to the floor until those results are back and are normal (please pray they are and this is just some weird fluke). 

Yesterday was hard for me.  This has been a rough road, and yesterday was the first day I felt like I might crumble right to the floor in a massive puddle of tears. This happens when I have been strong and steady for so long during times of anxiety and stress like this. 

I know yesterday was also rough on daddy, grandparents, and Kiran’s adopted family who follow our journey closely. We feel your love and support. Please don’t stop the prayers and thoughts.  We need it through these rough patches of withdrawal, uncertainty, and as we continue on the road to recovery. 

Kiran continues recovery on his terms. He did need three doses of Ativan over the course of yesterday/overnight. The nurse practitioner (who has been consistent this whole time and we love her) recommended he be put on enteral (through g-tube rather than IV) Ativan on a regular interval. He is getting some every 6 hours, and we should be able to wean it fairly aggressively. We will continue to follow his cues on this. 

Withdrawal is very hard. I don’t even have the emotional energy to write about the emotional experience. 

His arterial blood line came out this morning, so he is down to the basics. We are technically “stepped down” but they don’t have any beds available on the floor so we remain in our spot in the ICU.  We got the okay to start going back to his normal home feeding regimen, so he was able to try a bottle orally this morning. He only took 10 ml because he was still in a pretty fussy period. He is sleeping through his feeding time now, so we are just pumping his bottle in. I am not concerned about this – the feeding will not keep us in the hospital because he has the g-tube and we can continue our work on this at home. 

The doctor mentioned again if things continue to go well, we may be looking at being discharged later this week.  I thought I would be nervous – prior to this whole experience, the thought of being discharged before 2 weeks post-op terrified me – but watching him do so well throughout the entire recovery process, mixed with how much it sucks trying to live in the hospital, makes me very ready to get home and get on with things. 

We go for his lung perfusion scan at 3:30 this afternoon. They are looking for how much blood flow is going to each lung. Hoping everything looks good. His echo yesterday looked great, and he really is rocking his recovery!!!

I believe in this community of people. You have sent so much love our way and sent up so many prayers on our behalf. 

Today, please pray for baby Lauren. Her amazing parents have become our friends over the course of the last several days. They came here emergently from across the country the night of Kiran’s surgery. 

Lauren is only one month old, and they have had quite the roller coaster with her already. Dr. Hanley will be operating on her today. Please pray. 

I will not lie: it has been an exhausting day. This has probably been the most difficult day, from our perspective. Watching Kiran struggle through withdrawing off the strong meds he has been on is heartbreaking. It doesn’t seem fair, after all he’s endured, that he has to struggle through this journey as well. 

I wish I could take all the pain and discomfort away. 

He has needed two doses of Ativan to help manage the withdrawal and wean him from it all a bit more slowly. No more strong drugs though – only Tylenol and ibuprofen to manage pain at this point. 

Because the withdrawal upset has messed with his heart rate and blood pressure, we have not moved from the CVICU. The arterial blood line is still in. But we’ve held him quite a bit today (though he’s really coming back into himself and rests better in bed most of the time). He also got his post-op echo done. We were told clinically speaking, he should be able to move to the floor tomorrow, but it will depend on bed availability. 

Hopeful today was the worst of it. We did catch glimpses of our baby boy – some smiles, a few small giggles, his preference of resting in bed versus in our arms….

And his voice is definitely coming back!  Poor sweet boy. He is sleeping peacefully right now – I hope it continues or I don’t think I’ll be able to leave his side tonight.