Soon after Dr. Day had called to give his unofficial (but decidedly less doomsday) opinion, the Anesthesiologist called us. Sam had come through like a champ. We were happy to hear that he had already been extubated (no breathing tube), and that they would be observing him as he came out of the sedation. We headed back to the hospital, hopeful for the first time that things weren't as bad as Monday had told us. No, we weren't hopeful that Sam was fine. Just that things weren't as dire. It was the best we could provide.
When we got back to the hospital, we were greeted with a very rough looking Sam. Sedation wasn't kind. He wasn't pink...his skin was mottled. His eyes were red and puffy, as they had taped them closed. He was grunting and you could tell that his throat was sore. And he was groggy and out of it. So much for a little guy to handle and this wasn't anything invasive. This was keeping him still for a MRI. We spent the rest of the afternoon waiting for results, and slowly started to see Sam progress. His lips looked a bit blue, but his skin had returned back to a more pink color. His grunting, while there, seemed less pronounced. And Elisa was simply waiting for him to wake up enough to feed him.
I do need to take a quick off ramp to the story. Because through these two days, we still had two little boys at home. On Monday, when we realized that we would be spending the night, I sent the boys with my Grandma for an overnight. Tuesday morning, Lukas, our worrier, had started working himself up. On the way to school, he threw up. When Lukas gets worried, that's what he does. So my Mom took him to our house, cleaned him up, and he wanted to go to school. But it made me realize that the boys felt just as lost as Elisa and I, even without hearing the horrible comments made by Dr. Day. So we worked with the hospital to get them a visit. PCMC does have a wonderful department called Child Life. Employees in this group are there to help siblings and families adjust to the hospital. So we arranged for the boys to come see Sam, but to detour with Child Life first. Lukas and Miles were brought into a conference room and were given a doll (in a hospital gown). One of them had a nasal cannula. Another had an IV in its hand. The specialist walked the boys through what they would see and what Sam would have. She then showed them pictures of Sam's room and she encouraged them to draw a face and anything else on their dolls. They were given a bag of doctor supplies - bandaids, etc. - to take home. Soon, they were ready to see Sam. The Child Life Specialist was so kind, bringing them back into the CICU. Lukas and Miles glommed onto Sam like he was the last drink of water on Earth. They kissed him, hugged him, talked to him. It was wonderful and healing. I needed to see it. So did Elisa. After 15 minutes, I told the boys I would take them to a special play room while Grandma and Grandpa got to see Sam.
As the boys and I headed for the PCMC playroom (full of toys, arts, games, etc. for sick and healthy kids alike), Elisa let my parents hold Sam and then he was ready to eat. He ate aggressively, as though he hadn't eaten for a day...oh wait, he hadn't! My parents joined me in the playroom and Elisa did as well. We got some good time with the boys before sending them on their way and grabbing some dinner. To this point, we hadn't heard anything more related to the scans. The nurse knew that Dr. Day had called, but we had nothing from Neuro, and nothing from the doctors. Late into the evening, we inquired again and had the charge nurse come over. Sometimes, I wonder why people try to help when they aren't helping. The charge nurse stated that the head and neck scans were in. This is all we got: 1) they had found a large AVM in the right temporal lobe of Sam's brain. 2) There were no notes related to potential treatment options. 3) the chest scan hadn't come back yet. 4) Sam's vessels in his neck appeared enlarged, but not problematic. They attributed the enlargement to the required blood flow to the AVM. Outside of that, we had nothing. Elisa looked at me, clearly asking what we were supposed to take from that. I encouraged her to stick with Dr. Day's assessment...this was a charge nurse. I, somehow, trusted the opinion of the cardiologist a bit more. I'm not sure we even got opinion from the charge nurse. Just facts.
Outside of that info, we also found that we wouldn't hear from the Neuro team until Wednesday. So Elisa and I headed off to another sleep room (this one was decidedly NOT in the Ronald McDonald suite). We were greeted with a twin bed. No, not two twin beds. A twin bed. Needless to say, its a good thing we started sleeping close the night before. We'd have no choice tonight. And sleep we did. Not great, but decidedly better than the night before. We got up to feed Sam a couple times (he still seemed to be coming out of the sedation), and tried to get more sleep. We woke up, ready to face a new day and new challenges. Actually, Elisa got up first. I found I was still hung over from my numb shock. Sure, we had seen a couple glimmers of hope, but not much. My exhaustion was winning out. About 5 minutes after Elisa was up, I crawled out of bed and joined her. And the waiting game began anew. Today, we were hoping to hear more from Neuro...wouldn't you know, it would be the one thing we wouldn't get today.
Not long after Sam's morning feeding, we were told that Sam would be getting a new echocardiogram. He had received enough doses of Sildenafil that they wanted to see if his pressures in his heart/lungs had improved. So we left to get some breakfast. When we returned, the echo was still taking place. So we went back to our room. When we returned, the echo was still ongoing. We went to get a drink. Finally, when we returned and the echo wasn't yet finished, we just camped outside the room, trying not to see what the echo screen was showing. The tech left, we went back in with Sam, and the daily rounds of the doctors began. Today's news was mostly what we expected. They were also waiting for the Neuro team to respond to the scans and they also wanted to see the results of the echo. We were greeted, however, with an unexpected surprise. We were told that if the echo was positive, they were thinking about transferring Sam from CICU to a regular room upstairs. Wait a minute. That wasn't meshing with the dire warnings of Monday. Out of the CICU? One of the residents even asked "should we move him down to 1/4 liter of oxygen in preparation for home?" Elisa and I looked at each other. What on Earth were they talking about?
When they asked if we had any questions, I asked when we would get the echo results. Their first answer was "after rounds", or about 90 minutes. Maybe it was the look of disappointment on our faces, but the Cardiologist asked if they could take a 2 minute break from rounds - she would only need 1 minute to see the results. Fascinating that a 35-45 minute test needs only 1 minute to diagnose. She went off into a room to review the results and Elisa and I sat frozen. It felt like 5 minutes had passed, which I equated to impending bad news. However, she came back to us with a slight spring to her step. Her fists were balled up and held up to her chest. It was an encouraging posture. The doctor stated that Sam's pressures had come down. The highest percentage they got was a 50, which she said was equivalent to the 44 we had received in the last St. Mark's. We were back to our best point at St. Mark's, at least when talking about Sam's lung/heart pressures. Sam's 6th echo had brought us some hope. Now, we were waiting for word from Neuro. We actually had a slice of "hope" that we would be transferring Sam to a regular PCMC room, and away from CICU.
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