Good Day, Bad Night - May 12/13 Update
The ups and downs of this roller coaster we're on continue, as yesterday was a good day that turned into a scary night.
Good DayKilians been getting too warm in his isolette, and they wanted to move him to a crib. But that has been put on hold with everything else while we wait for his surgery consultation. So the nurses decided to just leave the top up and open, and he was one happy camper with their decision. As was I. Without that top on I had such access to him..I dropped the side down and basically tried to crawl in there with him. I felt like I could actually snuggle him, and it made the longing to hold him feel a little less heavy.
He was so alert yesterday, his numbers great, his new little jammies on, and the time spent with him almost had a sence of normalcy about it - distancing thoughts of the looming uncertainties surrounding his possible surgery. I drove home feeling a little better than I have in the last few days..talking myself up with the 'he'll make it's' and 'whatever will be, will be's'.
Bad Night
Then eight o'clock rolled around, and the phone rang. I'll start by saying that Kilian is ok. As of today he is back to all of his normal settings and stats, no harm done if you will. But last night was a rough one, and my legs are just now loosing the feeling of giving out at any moment. I didn't for a minute believe any of this was going to be easy. But nothing will ever prepare you for how hard it is. If you've ever lost someone, you know that initial feeling of physical pain in your chest, it becomes hard to breath, and the suffocating darkness seems like it'll never go away? That's what this all feels like, 90% of the time.
Last night Kilian's vent tube became dislodged, and he coded. However, his team is amazing and immediately started chest compressions (which he responded to immediately) while they figured out what was going on. They quickly determined it was the vent, and reintubated him. His doctor advised me it was a very short ordeal in way of time, and he came back to his normal numbers right away. I asked if they were concerned about anything, including brain damage, and he told me he was showing no clinical signs of anything. He was doing just fine, moving around and alert. We joked a little, everyone has been questioning if we should extubate him and see if he could breath on his own - and Kilian decided to take matters into his own hands and show us. Of course we would have loved the outcome to be different, but at least we have our answer to that question.
A side note here, the doctor I spoke with and was on call last night was the same that was heading the transport team for Kilians trip down to Milwaukee from Neenah. The fact that he was familiar with Kilian and having done the intubation the first time, I believe really was a huge part of this outcome. I will never be able to repay these doctors and nurses for taking such amazing care of my baby.
Of course, similar to how my pregnancy went, we weren't done for the night. We're allowed to watch Kilian on a video stream, which honestly gets me thru my days. I was patiently waiting for the feed to come back up (it is off for cares, interventions, etc)..I knew they were going to get an x-ray to double check the positioning of the tube and watch him very closely for the night - so it would be a while. That I was prepared for.. but once it came back, my heart sank. I saw that he had a catheter in his chest, and my first thought was fluid around his lung.
He had moderate plueral effusion in utero, which thankfully resolved itself, so I never gave thought to it again. But it's not good if thats back, and I knew my phone would be ringing shortly.
11pm I once again spoke to his doctor and he advised that it wasn't fluid, but air - and was caught in the x-ray. He told me that it was a very small amount, and if he had two lungs he would have waited for it to resolve on his own. However, because the air can cause a lung collapse, and because Kilian has no back up, he wasn't willing to risk it. So they cathed him, the air was gone, and he was right back to being ok. Pain meds were given, he said he did great thru the procedure, and the cath would be removed in 48 hours, assuming nothing else happens.
He also told me that at this point they absolutely believe the tracheal rings are causing him to not be able to get air into his lung (which is still functioning just fine), and that he was going to push for urgency regarding the possible Slide Tracheoplasty.
Today, I spoke with his neonatologist and she informed me that Kilian is still doing well. He remains at all his normal settings and stats.
He has had some excess mucous the last two days, and has had to be suctioned more often than previously. It seems to have started after his bronc, so it was assumed that it was from inflammation/irritation from that. However, with everything else going on, they decided they would test him for potential viruses - just in case. He is not showing any signs what so ever of being sick, but we all know how Kilian likes to roll so the poor guy now has 'isolation' signs up and requires the nurses/doctors to be fully gowned before entering his room until those results come back - hopefully quickly and negative.
The surgeon who may preform the slide tracheoplasty had received Kilians file earlier this week, but with this recent event the urgency for a consultation has definitely been realized. So sometime tommorow we will have that consultation with him and everyone who will be involved. No time set, as its simply a matter of getting everyone into the same room at the same time, between surgeries and patients and what have you.
I know that they are going to tell us the likelihood of a positive outcome is slim. I am prepared for him to either say he won't do the surgery, doesn't think it will work, or won't seem confident in it. At which point we have decided we will ask for a referral to Cincinnati and start that journey. I've of course looked into his credentials, which are impressive, but none of this means anything if Kilian is just not supposed to be here. However, that's something we're not willing to accept at this point. We're not, and most importantly, Kilian is not ready to give up.
He has come so far. He is doing so well. Every hurdle he has been faced with he has come out on top of, or is so close to being there. If these rings are his downfall, then that's what they'll be. But I still believe he deserves a chance to prove us wrong, and yearn for that 'I told you so' with every bone in my body. Tommorow is going to be a big day. Tommorow is going to be a hard day. And tommorow is going to be a day I know I will never forget.