I know it's been a while since I posted
Part I, and people have probably forgotten that there would eventually be a second entry about the complications after Garrett's third treatment. I actually even considered letting Part II go, since it's been so long, but for the last week or so, when I've had trouble sleeping, my mind would usually wander back to Garrett's last day with us. Then I'd get up, check my email, see what was new on Facebook, catch up on some blogs, and maybe play a few games of solitaire to clear my mind so I could go back to bed. Now I'm convinced that routine is going to continue until I finally finish Part II here.
This hasn't been a post I've looked forward to writing, as I don't really feel like I can do justice to Garrett's final hours. But those thoughts are demanding some form of expression, and I don't imagine I'll get a good night's sleep until they've made their way out somewhere.
So Part I left off with Chris and me learning that Garrett was in serious trouble because the bleeding in his brain was proving difficult to get under control. I don't remember how long we stood in his room while doctors came and went, adjusting the drainage bag from his shunt and commenting on how it just wasn't flowing, before the decision was made that he'd need another shunt to let more fluid out. Someone called for ultrasound equipment, but it didn't show up for ... I don't know. It had to have been close to an hour. During that time, we twice overheard a doctor ask a nurse whether the equipment was coming, and she'd explain that the ultrasound staff were told it was needed stat. Doesn't "stat" mean something like "right
now." Did the ultrasound folks not know it meant "
right now"?
Before that, though, when we were just beginning to digest the gravity of Garrett's condition, Dr. Lanzino came back to Garrett's room, and spoke with us just as calmly as he had before. That's when I realized that his tone and facial expressions weren't reliable signs for me to read as a gauge for Garrett's progress. It wasn't that he was being passive, and he wasn't
misleading us with false hope by any means. But we had seen Dr. Wetjen wear his grim outlook when he initially told us about Garrett's condition. And after Garrett's first procedure, we listened to the stress and relief practically drip from Dr. Cloft's words as he told us of its success. But looking back, Dr. Lanzino's demeanor seemed pretty consistent throughout our encounters. I guess we hadn't heard from him much during the most challenging times, though, so what differences might exist between, "Hey, things are looking good," and "Oh my, this is alarming," were lost on me. Maybe they were just subtle enough that I didn't notice them with the positive expectations I probably projected onto the situation.
So it wasn't until he returned to Garrett's room and told us ... I honestly don't even remember what he told us. He used full sentences. There was an adequate number of words. But all I retained is that he used the term "brain melt," and that's when what hope I was still holding onto evaporated in an instant.
When Chris and I first learned what condition was threatening our son and tried to learn everything we could online, we had come across that term in one couple's story. Their daughter had a vein of Galen malformation, and apparently the pressure from it grew so intense that it actually
liquefied the brain matter surrounding it. That little girl didn't make it. But is it any wonder? How is a person supposed to survive when her brain has begun to
melt.
My son's brain was
melting! What kind of quality of life could he possibly have now? Even if they turned things around that moment, what abilities would he have left? Would he be able to talk? Would he be able to eat? Would he have control of his body? Would he even be able to comprehend what was going on around him?
We had been worried about how he'd be affected from his initial heart failure and the "instrumentation" in his brain, but now this? Every day would be a struggle for him. Every day he would suffer. And every day Chris and I would ache for him the way our parents surely ache for us now with our pain at having lost him. The last thing I wanted was for Garrett to go on to live a nightmarish life. He had been through enough in the few weeks he'd been with us. He didn't need decades of torment. At that moment, my prayer changed from, "Lord, please pull Garrett through this," to, "Lord, either restore Garrett completely, or take him now."
So when they said another shunt would be needed, it felt like a technicality -- just going through the motions. When the equipment wasn't coming as quickly as it should have, I wasn't panicking, but was oddly annoyed. I actually thought, "
Now what if this was serious? What if this was life or death for my baby, and those folks are lolly-gagging?" But I wasn't convinced it was life or death. It seemed like Garrett was lost already. The medical staff were sincere in their continuing efforts to save him, but part of me wondered at what point they would stop and just let him go.
So when Dr. Arteaga approached us and said, "I hate having to ask this question at such a difficult time, but we need to know. If Garrett's heart stops beating, do you want us to try to get it going again?" I immediately said, "No." She looked from me to Chris and said, "Well you two can take some time to talk about it." But Chris shook his head and said, "No," too.
If I had room for anything other than despair at that point, I would have felt like a heel for not waiting for his input. But we've had conversations before about whether we would want to continue living if we had to rely on life support or if our quality of life had diminished to a given degree. So while we had never talked about this scenario specifically, I had no doubt he felt the same as I did about letting Garrett go. I suspect, like me, he believed we already were.
At this point, we were frequently hearing his heartbeat being described as "labile," and I wondered how long it would bounce between the 60s and 140s before it finally gave out. I think Dr. Arteaga then asked us whether we wanted to stay in the room while the second shunt was placed. The equipment wasn't there yet, but would be arriving soon. She said if we were okay with the commotion and the high-stress situation, we could stay there, or we could wait outside if we preferred. At least I remember getting that option at some point, although I'm not entirely sure it was for this. I think it was ...
Either way, some reason compelled us to go out to the waiting room. My mom was there, and I told her it wasn't looking good, but I couldn't find words to quantify how bad it was. In that type of situation, you're like a black hole: information and observations come in, but not much of anything manages to get out. I don't remember whether we were called back to his room, or if we just felt antsy and wanted an update, but after a while we made our way back into the PICU and found the curtain to his room still closed and a crowd of people around the door.
Throughout the afternoon, we often heard two lines of sympathetic refrain. As things looked worse, doctors frequently asked if there was anyone we wanted them to call. Other staff would ask if they could get us anything. We heard it again when we approached the group around Garrett's room. A woman asked if she could get us something -- maybe some water?
No. "Would you like to have a seat? There's a chair right over there. And a stool right next to it."
No.
It seemed "no" was the only word we could muster, and I wonder whether it was less an answer to their questions and more an obligatory utterance acknowledging that we had been addressed. They heard the
nos as a response to their inquiries, but with the turn Garrett had taken, it felt more like the overwhelming objection to the unavoidable tragedy we were about to hit head on. Can we call someone?
No. Get you some water?
No. Would you like a seat?
No. No, no, no, no. NO! This can't be happening!
The second shunt was in place, and Dr. Arteaga asked us to speak to Garrett to see how he responded. There was no response. It was hard to know whether to stay there or go back to the waiting area. We didn't really need to be either place. We couldn't help him there, but part of me wasn't ready to go back to sit with my mom. When you're so devoid of hope, you can feel a little conflicted about being around someone who still expects things could turn out well. I didn't fault Mom for her optimism. She just didn't know how terribly things were progressing.
So when Dr. Wetjen asked again if there was anyone we wanted him to talk to, I told him my mom was in the waiting area, and she should probably know what was happening. By then, Chris' sister Dawn had arrived, too. We all went in "the quiet room" in the PICU, and Dr. Wetjen explained what had happened to Garrett. He said they weren't getting any signs of brain life, and although he was given some medicine before his surgery to essentially keep him paralyzed during the procedure, they thought enough of that would have worn off by now that they'd see something. But because it takes 24 hours to fully leave the system, they couldn't officially declare him brain dead yet. Garrett's eyes weren't dilating when checked, though, and Dr. Wetgen said he's never seen a patient come back from that degree of brain damage.
Things were a blur again after that. I think my mom was able to go back to Garrett's room and pray for him. Soon enough, Chris and I were called back there because Garrett's heart was beating more erratically and they didn't expect him to hold on much longer. Dr. Wetjen had mentioned that some parents find comfort in these circumstances by allowing their babies to be organ donors. I asked what would be involved in that, but the staff explained that with his inadequate perfusion, he wouldn't be a candidate. His heart just wasn't getting enough oxygen to his organs, so they wouldn't be in good enough condition for donation.
They told us that they could keep giving him medicine to try to help his heart (essentially to try waiting until enough time had passed for him to be officially declared brain dead), or if we wanted, we could remove all the devices and let the end come naturally. My mind had already been made up, but this time I turned to Chris for his answer. He shook his head and tearfully whispered, "Just let him go." I simply nodded my agreement.
They said we could hold him again once they detached him from everything, but I wasn't sure I wanted to. He was being ripped away from us. Wouldn't it hurt that much more to have him in my arms again? But I think it's assumed that that's what parents do, and thankfully there was a small, rational part of me that knew I would regret it if I didn't.
I asked if he would be in pain, or if he'd be gasping for air. The nurse explained that he'd be relaxed and would be given another dose of Fentanyl to make sure he was comfortable.
So they pulled the glider over and I got situated with a pillow and blankets on my lap. This routine had been such a joyous event the last time he was taken off the ventilator -- when I was looking forward to embracing and nursing him again. But now his body was still on the pillow. They had pulled a blue cap around his head to cover the shunts and blood. Mom brought a blue and brown blanket, which we draped over him. I rested my hand on his chest, barely able to make out an occasional heartbeat. I thought it would only be a couple minutes before he slipped away, but it seemed to last a lot longer than that.
I stroked his slender fingers and thought about how they would never grasp a baseball or push a toy car around with his older brother. His face was slack now, and as I looked at his smooth forehead, I wondered whether the classic Rossing furrow would have been more prominent as he got older. He was a beautiful baby, but we wouldn't get to see the handsome man he'd grow into, or what traits he'd have from either Chris or myself.
I think the medical staff left so we could have some private time with him. I think my mom was able to stay, though, and Dawn might have been there, too. I don't really remember, though. It seemed like the world suddenly shrunk to encompass just me, Chris and our baby boy. Eventually, someone came back in to check his heart. He was gone.
The child life specialist had told us earlier that she could get paper and ink to make keepsakes of Garrett's hand and foot prints. She could also make plaster molds of his hands and feet if we'd like. Once again, I wasn't so sure I wanted to. He was gone. Wouldn't having those things around just keep the gaping wound in our hearts open longer?
But as much as I didn't want to right then, part of me could see how I might cherish those years down the road. So we went ahead and gently pressed his hands and feet into the ink pads and then onto the paper. The child life specialist poured the plaster into cups and carefully created his molds.
I asked one of the nurses what we do now. She told us to take the time that we needed. No one would be rushing us out of there, but we didn't need to stay, either. We could leave whenever we were prepared to go. I reiterated, "But what do we
do?" nodding toward Garrett. We came to Saint Marys expecting to take a healthy little boy home with us once he recovered. Now I had a lifeless baby in my arms. What happens now? What do you do with the body?
She started telling us what to expect with the funeral home, and my mom made some calls to look into that. You don't expect to have to make those considerations at our age -- especially regarding the remains of your child. We made the bare minimum decisions we had to that night -- choosing a funeral home and deciding to have Garrett cremated.
I called a few family members to let them know Garrett didn't make it, but we let others pass the news on from there. A lot of Chris' family from Lake City wanted to come out, and although we told them we didn't know how much longer we'd be there, they felt they had to come. I didn't think I wanted anyone else there, but once they arrived, I was glad they came.
The nurses managed to remove the shunts and clean Garrett up, so he was wrapped in his blanket, the cap still pulled around his ears, and back in his bed before everyone got there. He still had some faint color in his face, so if you didn't know better, you'd half expect him to begin moving at any moment.
But he wouldn't move again. We left the hospital empty handed and defeated.
That pretty much brings us up to the post from
the day after. It's hard to believe it's been over four months since we've said goodbye to out little Garrett.
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