Kiran was extubated about two hours ago and is doing very well!  He is weaned off of most of his meds and sedation. He has one med that is still helping him with pressures, morphine, and his Lasix drip. And we have heard several times the chest tubes should come out tomorrow!  I am amazed how quickly things are progressing today, and it is so good to see him more awake and hear his sweet (though hoarse) voice. ❤️

We are moving forward today. Kiran had a stable night. They weaned his dopamine down from 5 to 3. His respiration rate was changed to 10. This means the ventilator is initiating ten breaths per minute, but he is able to breathe on his own around it as well. We are seeing more and more breaths being initiated by him which is lovely to see. 

He had to have a couple doses of sedatives overnight, but only when he got agitated due to them doing assessments, changing positions, etc. The night nurse said he wasn’t as easily consolable without his mom and dad there to help. 

His sedation drips remained the same, though, which is good news as we move forward toward extubation hopefully this afternoon. They also increased his diuretics (to ensure no fluid buildup in the lungs) and stopped his food (which was only a slow trickle anyway), also in preparation for extubation. 

They have pulled out two of his invasive pressure lines – they were actually in his heart measuring blood pressures from the source. In a little while, they also plan to take out the rectal thermometer and the foley (catheter – placed in his bladder to catch urine). 

So – things are coming off!  Slow and steady. 

The big thing that came off last night, though – his scar bandage. His zipper scar is now open to the air to allow for faster healing. At around 2 am, I came in and saw his scar for the first time. Fellow heart moms, you prepared me for so much, but I don’t remember being told about this. Every. Emotion. Came. Rushing. Back. From diagnosis to today. That scar is a very visual, intense reminder of our journey thus far. Kiran’s strength. The seriousness of his condition and the surgery. Just everything. I was overwhelmed with it all, and it took me a long time to stop the tears. 

I continue to be amazed at how strong Kiran is. I continue to be amazed at the pockets of strength we continue to find as we step forward each day. We’ve got this. 

We are slowly coming down on ventilation settings and seeing Kiran initiate a few more breaths every minute. His ventilator respiration rate is down to 16 breaths per minute now – a change they just made – and he seems to be tolerating it just fine. 

He is being weaned off the nitric oxide today pretty rapidly. This helps the arteries in his lungs stay open so blood flow isn’t constricted.  He has never been on the medication that also does this, but it is protocol coming out of the OR. His pressures haven’t changed since they started weaning it, so they think he will be off it by the end of the day. 

He has been weaned off epinephrine, which he was on to help his heart work. If the nitric wean goes well, they also think they will be able to start weaning the dopamine which does a similar thing as the epi. 

So – movement in the right direction. They think they may be able to extubate tomorrow!  

Kiran continues to do well. Toward the end of the day yesterday, he was having more periods of agitation and his pressures would climb until he was given either a sedative or morphine (as an added dose, as he is getting both of these as drip medications as well). They finally decided it was necessary to start his drip on another sedative, and this allowed him to have a very restful night. 

The nurse said she only gave him an added dose of the original sedative just a bit ago this morning, because he very much disliked his x-ray and sheet change.  When I came in, he was still coming down from that agitation. Now, his pressures are back down to the range they want them, and he is back to resting peacefully. 

If there are any big changes at rounds today, I will definitely update. However, I imagine today will be much like yesterday. His body is still resting, and he is still on a lot of support. This is absolutely normal after the big procedure he had. I was reassured by our nurse tonight – again – that nothing is out of the ordinary at this point in recovery. It continues to be a lot of titration (I have to show off my new medical term knowledge) – which is basically them going up and down on doses of medicine dependent on how he responds to it. They continue to work to find his sweet spot to keep his pressures good and him calm and comfortable. 

Also, he is diuresing well (I know, now I’m just showing off – the perpetual student in me is loving these new medical terms!) which means he’s peeing well. They started him back on furosemide (Lasix), which he has been taking at home since he was about five months old or so. This helps pull the excess fluid out – makes him pee. He is responding well to it. 

I haven’t seen an oxygen saturation below 98 since surgery, and he sits at 100 most of the time. That continues to be surreal to me but in the best possible way. 

All in all, we continue down a fairly smooth road. I know there are some pretty scary bumps up ahead – I have seen glimpses with his brief periods of agitation of what we will experience once he starts being weaned off these meds – but I will do my best to live in the calm as long as we are on this step of the journey. 

I will say this: I miss my baby. I can’t wait for him to wake up and smile and talk and laugh … But I am so thankful he is resting so well. 

I haven’t updated, because it has been a gloriously boring day. Kiran has been doing really well. He continues to be stable, and nothing he has experienced today is out of the ordinary or cause for concern. 

There has been a lot of tweaking with the medications, the amount of sedation and pain medicine, etc. And, like I learned his first week of life in the hospital, oftentimes they have to tweak something because they’ve tweaked something else. For instance, they gave him something to get his ph balance back to a normal level, which caused his potassium to drop, so they had to give him potassium. Sometimes the carousel seems crazy, but it is how things go in the hospital. 

It has largely been a day of rest for him. He has moved his legs and gotten a bit agitated a few times – even kinda opened his eyes a couple times – but he seems in so much pain when this happens, they have given him a bit more morphine so he can rest comfortably again. One time in particular was very hard to see him grimace in pain and make cry-like noises (best he can while still intubated) …. I can tell this recovery process will be heart-wrenching for his mama. 

Kiran did well through the night. The doctor said she didn’t have to do anything for him that wasn’t completely normal and to be expected after a major open heart surgery. He has a lot of wires and tubes and medicines he is hooked up to – and he is still intubated – but it wasn’t hard to see him that way. Because he is doing so well. Because he came out of that surgery like a rockstar. Because he is my little man, and healthcare stuff isn’t as scary to me as it once was. 

And this morning, when we went in to see him, after our visit last night at 3:30 am visit …. His oxygen saturations were at 100!!!!  We have never seen that before, and I honestly didn’t know it would be possible with his anatomy. For those who don’t know or don’t remember, he lived with an oxygen saturation between 80 and 85 before this surgery. 100 is an amazing number to see. Brought joyful tears to this mama’s eyes. 

They have already started weaning him, very slowly, off the oxygen. He moved his little legs and got a little upset this morning when we were with him but calmed down very quickly with music. I know as we start weaning him off of things and he starts being more awake, it’s going to get tough. Bracing myself. 

Rounds are at 9 am and we will know more about the plan for the day for him then. But everything is looking good ❤️

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!