Kayla's Story Part 3: An Uncertain Future
My heart sank when I heard that my baby was going into unexpected heart surgery. This was not a part of the plan that was discussed during my pregnancy. This was not supposed to be happening. I knew things could always go awry, but I didn’t think it would happen to us. Who does though? For the better part of two months, I had been visiting Luka by myself because of the pandemic.
I was trying to be there for Luka alone and it was torture. They made exceptions and surgery was one of them. I felt grateful, but I also didn’t. There were a lot of strong emotions. A lot of terror and resentment that the first time my husband and I saw our baby together after over a month was when he was being taken to open-heart surgery. To say life isn’t fair is an understatement.
The clock strikes 8 and Luka is taken back for his second open-heart surgery. We go to wait on the 20th floor of the hospital and it’s endless. I’m thankful I have my phone and internet. I think I would have lost my mind if it wasn’t for the distraction. Every time there is an update we’re pulled to the consultation room and I feel like I’m about to puke. It’s good news that we get, but we don’t know that going in and the reality that something could have gone wrong is almost too much to handle.
We’re told they might be able to close his chest so there is that hope at least. The surgery is done by evening and we’re told we can finally go see Luka. They weren’t able to close his chest unfortunately because of all the fluids he retained but the good news is he is doing pretty well considering. Luka doesn’t look like himself. He’s so puffy and swollen and it’s so much harder to see him after his second surgery. I didn’t think that was possible but it was. He just didn’t look like himself.
As we’re touching his bare skin (where we can find bare skin, anyways) the doctors are explaining Luka’s fragile state. He has multiple nurses tending to him and we’re assured there is never a time when he doesn’t have eyes on him. I was hoping he would recover in no time. But that just wasn’t the case. Luka was extubated about a week after surgery and I remember being so excited to finally hold my little baby again. I asked the nurse who said she would help me hold but told me she was “too busy” at the moment because she had a line change to do.
I tried to be nice so I waited. I ended up not being able to hold Luka before I had to leave to go home and be with my other two children. That night I got the call saying Luka wasn’t doing too well and had to be re-intubated. I was crushed. The nurse wasted the only day I might have had to hold my son. I was hurt and angry and scared for Luka. I had read of babies who had failed extubations and it could be scary. Real scary.
It takes another week before Luka can be extubated again and this time, Luka is victorious. I’m so thankful but we still have a long way to go. Luka is able to go to the step-down unit on March 10th, 2021. The progress feels stagnant and I accept we will be there for some time. Luka is having a hard time weaning but that’s okay. We will get there. Eventually. Luka receives another heart catheter for his PVS on March 29th. I remember being told he might come back intubated but I didn’t expect that at all. He came back on oxygen but was never intubated. For some reason, it feels like a defeat.
Will Luka ever feel better?
Will he ever get better?
Fast forward to April and It’s Easter Sunday. I remember doing everything I could to get his milestone photos while trying to not let it look too obvious he was in the hospital for it (even though everyone knew he was there) I still wanted those picture-perfect milestone photos for Luka. It's sometime in April when the doctors ask us how we feel about a Gtube. Luka still wasn’t progressing when it came to food and his doctors strongly believed he would need assistance with eating in the long term due to the difficulty Luka had with extubation during his last surgery.
It takes my husband and me a good week but we reluctantly agree. Looking back on it though, I am so glad we said yes. As scary as a Gtube might seem it has been so beneficial for Luka and for us. We make another round of musical rooms and Luka is back in the step-down unit from his stay in ICU on April 14th, 2021. Today is huge because it’s also the day he goes on room air. No more cannula. Things are going well. The wean from medication is slow but steady and we are in a good place. Talks of the Glenn are back on the books and we’re hoping we can get there. Right now we’re just playing the waiting game. Waiting for Luka’s heart to be ready for the surgery that will give him what they call a “stable anatomy.”
We get through May without a single scare. It’s become routine. Four days at the hospital at home and three days at home with my other two children. The only thing holding us back is that darn surgery. Luka was having problems with his pressures and his left veins. They just weren’t where they needed to be and it didn’t seem as if they would ever get to that point. Luka was on a medication called “Sildenafil” at that point which was helping his veins but the doctors weren’t confident that Luka was going to get where he needed to be.
We’re in a meeting with the doctors when we’re told all this and I just start breaking down crying. What does this mean for Luka? What are they telling us? I ask
“If we can’t get Luka to the point he needs to be at for surgery then can we look at options for transplant?”
The answer isn’t what I want.
“No. Unfortunately, Luka would need a heart-lung transplant which we don’t do here.”
It feels like my heart has just been ripped out. Did they just tell me that Luka was going to die? That they can’t help him any further if his veins don’t improve? “I know you’re disappointed…” That’s when I lost it. I’m freaking out now. I’m crying and you can barely make out my words I’m crying so hard. “Disappointed doesn’t even begin to describe it. Luka hasn’t seen anything except these hospital walls. He doesn’t know his brothers. He hasn’t even seen a tree or the sky. All he knows is… is THIS” and I just keep pulling at my mask.
My heart can’t take it. Luka is doing the best he has EVER done and now they want to tell me my son is going to die??! How dare they. How dare they tell me while Luka is doing so FUCKING GOOD that he is going to die. For a second it feels as if all hope is gone but I can’t accept it. I WON'T accept it. LUKA WILL NOT DIE. At this point, palliative care is involved and I am open. I want the best quality of life for Luka. He deserves more than four walls. He deserves to see a flower. A tree. A cloud. His brothers. And he gets to.
He finally meets his big brothers on June 11, 2021, at 7 months old. It’s bittersweet. Sweet because he is meeting his brothers for the first time but also bitter because it took this long. It’s one of the best memories we have in the hospital. And I will cherish that day for a lifetime. Palliative Care is the best thing that has ever happened for Luka and I regret not getting them involved sooner. But Luka needs more. He’s sitting in this hospital with nothing but a hospital and my heart is aching for him to come home.
I know a lot of people are anxious about taking their fragile babies home but Luka has been in here for so long that even a week at home with him sounds like heaven. I want to be a family. I want Luka to know there is something outside of the hospital. He deserves it. The doctors don’t want him to go home on the basis that something “might happen” but that’s not good enough for me. It’s not an excuse.
I know they have Luka’s best interest at heart but he’s still my son. He’s still my baby. He still has brothers that need him in their lives and he needs them in his. Day in and day out we see Luka. Just being a baby. Sitting in his room on nothing but a pulse ox. It’s great… but it’s also so hard to see. Luka NEEDS to come home. I finally work up the courage to tell the Palliative team that while I am so grateful to this hospital for taking such good care of Luka, I felt their job was done.
The Glenn wasn’t in the future as far as anyone could see and Luka had been stable for the better part of two months. It’s time for Luka to come home. It’s time for him to be with his family. I explain to the Palliative Team that if the doctors can give me medical reasoning as to why Luka can’t come home then I will accept it. But I can no longer accept the reason that he must stay in the hospital away from us is that “something might happen.” That’s not a reason for me to keep my son. It’s just not. Palliative promises to bring it up. And they do. We are given the green light once more to take Luka home. We are set to go home on July 1st, 2021. Luka is coming home for the first time. And we couldn’t be happier.
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