Dr. Day had just excused himself from our bedside in the PCMC Cardiac ICU. The words he had spoken had literally crumbled us into piles of misery. The idea that Sam could die, when we had spent 17 days thinking he was getting better...2 days having him home...and 1 appointment where all I wanted was some medication; it stung my senses. It obliterated all logic. And I wept. Elisa wept. I called my mom and broke the news. I had to ask her to go somewhere where Lukas and Miles couldn't hear. I could barely get the words out. Sam could die. Elisa called her parents. She had the same struggle. The nurse kept quietly crying with us. From someone that believes that hope never dies, I saw no hope. I felt no faith. I was empty. Alone again, we cried together. We cried until something else took over - shock. I knew it was happening to me. I knew it was happening to her. The crying stopped. The pain was there, but I started to feel a numbness. My body was shutting down. It couldn't handle what we were told.
They told us to go eat. We blindly walked down to the cafeteria and got sandwiches. I remember seeing the nurse down in the lobby. We made eye contact. I wonder what I must have looked like. I felt like I was an empty shell. We barely ate. I think I took 3 bites of my sandwich. I don't remember. They had arranged for us to have a room in the Ronald McDonald Family Room of the hospital. We checked in, got our room, and headed back to Sam. We fed him and then went back to our room. We laid together. We didn't sleep. We talked. And the words were so horrible...so painful. Elisa asked me how we could bury a child. Elisa told me over and over that even though she had said she didn't want Sam at the beginning, she really did. It was all that she wanted. I said nothing. I hugged her. I cried. I died inside. Before we laid down, Elisa grabbed the outfit that Sam had worn to his appointment. She smelled it. I smelled it. It smelled like Sam. Elisa asked how long the scent would last after he was gone.
Over the course of 10 years being married, our sleeping habits had evolved. We used to be the cuddle couple, until Elisa started pushing me off the bed. Then we went our separate ways (well, edges of the bed), and Elisa would work her way over until she had 90% of it and I had a sliver. We finally upgraded to a Kingsize bed and we both had all of the room we could want. I didn't really notice is until this night, but Elisa and I slept apart enough that we didn't touch. Who actually notices something like that when you're just trying to get some sleep? On this night, though, I couldn't close my eyes unless I was touching her. Elisa felt the same way. The first four hour block of the night, we didn't sleep. We just laid there. We got up and fed Sam. Elisa asked me if she would forget his cooing noises. I blindly stared back. When we got back to the room, though, through the numbness, I started getting mad. Sam would not go quietly into the good night. No, he was my son. Elisa's son. He was a Pierce. When Elisa asked how we could lose him, I started telling her that Sam was a fighter. When she asked what was going to happen next, I told her that Sam would fight. That was the only bit of hope I could muster. Sam would fight this until the end. He had done it for 19 days already. He'd do it for the coming days. He'd have to.
We slept a bit more during the next four hour block, but only while we were touching. We fed Sam and went back to bed. When we woke again, Elisa said that we needed to go be with Sam - we needed to spend what time we had with him. I didn't move. I didn't want to move. I couldn't get out of bed. I think Elisa knew. She didn't push. 15 minutes (or was it 2 hours?) passed. Elisa said we needed to get out of bed. I didn't move. Another amount of time passed. She asked again. And finally, we stirred. We would face Sam and the day. Exhausted, still in shock, and so sad, we'd go be with our son.
When we arrived at Sam's bedside, Dr. Day (or should I say, Dr. Doom?) was there. He asked how we were. I wanted to punch him in the face. I told him that the previous night was horrific. He apologized. I didn't care. He did have a bit of news, however. They had run the blood test looking for that protein. Sam's protein level was low. Dr. Day said that Sam's heart seemed to be holding up under the pressure so far. He said it was encouraging, and perhaps the AVM wouldn't be as severe. He left. I had no room to hope. I just went back to telling Elisa that it was proof that Sam was fighting. It's all I could offer. It's all I could believe. When his nurse came in, we found out that Sam was to have an MRI. They wanted to see more of the AVM. Soon after, the team of doctors and support staff came around for rounds. This, again, is a rundown of the patient and what's happening, and we found out a few more details.
This group (which included Sal, not Dr. Day) acknowledged the AVM. Sal said, however, that "while the AVM is there, we don't necessarily believe it is causing the pulmonary hypertension." Huh? The Cardiologist also said that Sam's aorta seemed to be dilated. And they were starting to go down the rabbit hole of potential genetic problems. We would soon meet with the genetics team to see what we could uncover. The supposed combination of AVM, pulmonary hypertension, dilated aorta was signficant, although the doctors weren't sure why. They also said that Sam would be getting an MRI/MRA (of his head and neck, along with a portion of his heart). Sadly, he would have to be sedated and intubated.
Next, came the genetics team. We got the pleasure of running down our entire family history. We did discover that they had a theory. They believed that Sam could have a genetic condition called HHT. This genetic disorder caused AVMs and pulmonary hypertension. But it also had other big symptoms - 3-4 nosebleeds per week. Blotches on the tongue, lips, and skin. They searched hard in our family history. I think I could feel their disappointment when we didn't have a nose bleeder in our family tree. By the end, they said that HHT was lower down the list - sure, it could be first appearing in Sam but that was very rare (like 1-2% of all HHT sufferers didn't get it through hereditary). They said that they would consult further with the doctors before ordering some genetic testing. More to deal with. More numbing conversation. Less hope.
We spent the morning simply watching and holding Sam. Since he was going to have a MRI, he couldn't eat. He was on IV fluids and his last feeding had been at 4:00am. It was scheduled for 3:00pm, although they were trying to get him in at 11:00am. It hit about 10:30 and it appeared that his appointment would be at 3:00pm, so Elisa and I decided to go home. We had to see Miles. We needed one of our boys. We needed to shower. We needed to be out. As we left, Elisa cried. She reminded me (without need to) that we were again leaving a hospital without our baby. I cried. We drove home in mostly silence. When we got home, Miles wasn't there yet. Elisa's telephone rang and we found out that Sam was heading for an MRI early. The anesthesiologist would be calling soon for our consent to put him under. And then we'd wait for 90 minutes. We spent some time with Miles when he arrived, reminding us just how amazing our boys were.
Elisa went to shower and I was the one that got to give consent. Everything was scary at this point. He talked about how he would take it easy with Sam, especially given the AVM. He told me he would have various medications in case Sam got in trouble. They would intubate him to help him breathe. I gave consent. I hung up the phone. I prayed that the phone wouldn't ring before 90 minutes had passed. Soon after, our pediatrician called. He couldn't access the records at PCMC, so I gave him the rundown. He expressed his agreement that Dr. Day's delivery was...clinical. Dr. Pete didn't have much for me. He was mostly wanting to be caught up, but he did express his belief that the AVM and hypertension were unrelated. It definitely felt like we had two schools of thought here...those that believed the AVM was the cause, and those that didn't. I hung up and went upstairs to shower. At this point, about 30 minutes had passed. I was still nervous about any ringing phone before the MRI was over. I didn't want to hear that something had gone wrong.
After I showered, I got dressed. I was almost ready to go downstairs (about 60 minutes had passed since I gave consent) when the phone rang. I was at the top of the stairs. Elisa was in the kitchen. She said it was the hospital. She answered at the bottom of the stairs and started walking up. I watched her face. I couldn't read it, but my heart did. I felt it was bad news and something happened to Sam. I was prepared to hear that he had died. I was that far gone. As Elisa got near the top of the stairs, she said "oh, good". I exhaled and almost cried. That couldn't be horrible news. We went into our bedroom. Elisa was talking to someone and every once in awhile would say "good", or "that's good", or "okay". I was so raw and so horribly detached from my logical self. I started to cry. And not the weepy cry. They out of control cry. I couldn't hold it. Elisa was probably thinking I needed a straight jacket.
She got off the phone and let me try to compose myself. Apparently, Dr. Day had called (oh, goodie!). He must have been watching as the MRI was done, because he had seen the results. Before Elisa said anything, I remember wondering how Dr. Day and the words "that's good!" could even go together. But they did. What he said, I will preface, was covered by a bunch of "I'm not the expert" or "other people will have to confirm", but Dr. Day shared his views. First, the AVM was not in the location he had expected. Second, he didn't believe the AVM was as severe as he had originally expected. Third, he believed that the neuro surgery team could coil it (that is...go in through the artery and close it off). Fourth, while the other cardiologist was clearly concerned about the dilated aorta, Dr. Day wasn't. He believed it was dilated due to the extra pressure, not to other circumstances or genetics. And fifth, if they fixed the AVM, the pulmonary hypertension would resolve. Dr. Doom, who clearly had a picture of the AVM in his head when he gave the horrific prognosis on Monday, was saying that there was hope. Yes, he said he wasn't the expert. But it wasn't what he expected, and that was a positive.
I couldn't help it. A glimmer of hope rose up in me. But instead of feeling excited, I just cried. This time, the silent weepy kind. But it seemed like crying was all I knew how to do.
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