Surgery, Holding Him, & the 2nd Code, Part 1

We go up, we go down, we go round. From talking to the surgeon and having hope, to finally being to hold him, to ending the night with him coding in my arms. People keep asking me 'how are you doing it?', and the answer is I'm not. I'm honestly not doing anything other than taking deep breaths, and putting one foot in front of the other. Auto pilot fully engaged, just moving thru the motions.

Kevin and I headed down to Milwaukee on Friday to meet with the cardiothoracic surgeon that may perform Kilians Slide Tracheoplasty. And I guess before getting too far into this I need to correct something.

Wednesday night when Kilian coded, I misheard the doctor when speaking on the phone. I thought he said Kilians ventilator tube became dislodged, but it was actually clogged. I had mentioned the mucous we have been dealing with in a previous post, and it compacted so much in his tube that they had to remove the tube and reintubate him with a new one. They sent in for more tests (which they had previously done for bacteria and viral, but all came back negative), and this time it came back positive for Enterobacter Cloacae - a bacteria that can cause respiratory tract infections. I know.

They put him back on an antibiotic, a pretty heavy duty one, and increased suctions. The mucous had actually seemed to be decreasing. Slowly but getting better none the less.

We sat down with the surgeon and a few nurses who were interested in what he had to say. Kilians been quite the hit down there, and we welcome anyone who wants to learn to be included in his care. Similar to this blog, if any of this can help someone else in any way, we're happy to share his story.

He drew a diagram of the procedure, spoke lightly on surgical prep and what post op would look like...and here I'm going to side track. And be very transparent.

On Saturday we spoke with another doctor who would be assisting with Kilians surgery. We went into greater detail about -

The procedure - Slide Tracheoplasty. Being put under and on bypass. Cracking his chest, making incisions in his airway, sliding the airway together, stitching it together.

The risks - vocal cord damage, nerve damage causing his diaphram to move up - compressing his only lung, in which case they would perform another surgery to stitch the diaphram back down in place.

What post op would look like - possibly being on ECMO for a few days, recovery in the CICU, possible inflammation of his heart from bypass preventing them from closing his chest for a few days (and that he would have glorified plastic wrap over his open heart). And what sounded like, without getting into because one step at a time, heart surgery down the road.

The surgeon gave us his estimated survival rate - 90%. He almost interrupted himself from saying this by telling us that 10% is still very high in their eyes, but I was expecting so much worse that 90 seemed so big. I was sort of blown away by it once it really registered.

The odds that Kilian has faced with all of his anatomical anomalies, Ventriculomegaly, pulmonary hypertension, the prematurity, the Intrauterine Growth Restriction, have never been numbers in favor of him. I told the surgeon that I expected much worse, and he once again reiterated that the 10% was a large number, but he seemed very confident in a way that went without saying, if anyone could do it - he would be able to.

In discussion, his code event from Wednesday night came up, and the surgeon was unaware of it. He explained to us that normally they like to wait until the little ones are a bit bigger, but the fact that Kilian could not sustain himself at all once that vent tube was out added urgency to the timeline. He said otherwise we're just waiting for another event, and the possible negative outcomes from it. We certainly agreed, but were shocked when he said he wanted to perform the procedure this coming week - as early as Monday.

Once again my head was spinning. It caught me so off-guard and I stumbled a little in breath. I wasn't expecting him to say he'd do the surgery. I wasn't expecting a 90% survival rate (I just feel like that's allowing my hopes to be too high). And I certainly was not expecting it to be happening so soon.

We walked out, Kevin feeling confident and hopeful, my doubt being alleviated a bit, a little rattled at the fact that this could possibly happen in three days - but good. We headed back to Kilian.

The rest of the day was good, all of his numbers were great, the chest catheter was removed, he was back in his jammies, and there were even talks of being able to hold him. I told the nurses, if we shouldn't then I honestly didn't want to push it. But in knowing that he may not be here after Monday, I really did want him in my arms.

Later that night after cares, he was a happy little camper. He had been given a little bit of morphine and we decided tonight is the night, I was going to hold him. I felt bad in knowing he'd probably only tolerate it for a few minutes, and we'd have to put him back to bed without Kevin having his chance. He kept telling me it was fine, and I said to him tommorow. You can hold him tommorow.

Three nurses came in for the prep work of setting me up to transfer him to. He has his vent, feeding tube, heart and lung monitors, and PICC line that all have to be carefully maneuvered for something like this. They propped pillows up on me, moved the machines closer, and got ready to lift him. I could feel myself holding my breath as they lowered him into my arms, and he melted right into my soul. I will never be able to describe what that moment felt like.

They made sure he was positioned just right, all the wires were good, and taped his vent tube to my shirt so it wouldn't be moving around. It was a delicate process, but once they walked away allowing us to have our moment (after taking pictures and lots of oh's and ah's..the nurses were just as excited as I was), I let out that held breath, and all the anxiety disappeared.

I just stared. I was in awe of how normal and right it felt. He didn't seem so broken, I didn't feel so broken. It gave me a renewed sence of confidence in thinking ok, we've got this.. He was completely content nuzzled into me, his breathing so rhythmic, so soothing. I could have spent the rest of forever right there in that chair with him, listening to what's become white noise to me from the machines and monitors, Kevin right by my side, in a moment I have been looking forward to since the day I found out I was pregnant. I was able to sit with him for almost forty five minutes before he coded in my arms.

I'm going to need another day for the rest. Again, Kilian is back to fine. He did end up needing another chest catheter after they found he had more air around his lung, a lot of air. But once again he is back to his normal settings and stats, and normal self, and we'll head back down today to have our last day with him before surgery.