When I think about what life has been like the past 3 ½ months, it feels like we’ve been swimming in an angry sea among giant waves that crash over our tiny boat in an attempt to capsize us. Sometimes we’re under the water with a faint glimpse of sunlight above. During those times, it hurts to breath. Other times the waves seem to slow down just enough to allow you to see what’s on the horizon, fill your lungs with air, and give you a chance to see the sun. The sea has been relentless in its ferocity and the physical as well as mental energy it takes to stay a step ahead of the next wave is numbing. One of the greatest challenges has been to try and maintain a sense of normalcy in a time of great abnormality. I always feel like I’m trying to stay a step ahead of Liam’s next question and try to come up with an explanation that he’ll find acceptable when explaining something new or different that’s about to happen to him. (He doesn’t like surprises – he wants to know everything that’s about to happen so that he can mull it over and decide how he feels about it.) Sometimes I’m trying to figure out how to explain something to him as I’m learning how to pronounce the name of a procedure. How does a parent explain to a newly minted 3-year old what a CT scan is vs. an MIBG scan and how the picture taken with both cameras is different? How does a parent account for time lost during anesthesia? The good news is I don’t have to account for the loss of hair, eyelashes or eyebrows…he doesn’t know they’re missing. He still has enough hair on his head to think he has a full head of hair. I’m so used to seeing him without hair and eyelashes that it wasn’t until I saw photos today of my little pumpkin with his beautiful hair, expressive eyebrows and luxurious eyelashes that I realized just how different he looks. To me, he looks like Liam. I don’t notice the difference…I just see my son who makes me laugh from my heart. Today he was annoyed with the hair he does have and kept trying to pull it out. He became completely frustrated that it wasn’t easily pulling out. He demanded to know where his “magic hair” was and why he had this new hair that wasn’t easy to pull out. Ah, the good old days of magic hair when Liam could pull handfuls of his hair out with a single pull.
Wednesday, June 13th didn’t start out so smoothly. We had one objective for the morning: Get Liam to drink the horrible-tasting contrast fluid needed in order to get a good CT scan reading. The small amount of contrast fluid is mixed with 8-ounces of apple juice, but even diluted it still tastes “yucky.” Larry and I mapped out our pre-contrast strategy…we decided to wake Liam up around 8 a.m. in order to give us enough time to get the contrast in him…one sip at a time. But we also knew that if it wasn’t going well, we would need to give ourselves enough time to get to the hospital to have an NG tube painfully snaked down Liam’s nose in order to get the fluid in him. Because of anesthesia, he couldn’t eat anything other than clear liquids. Liam woke up at 6:15 a.m. begging for his special juice filled with calories but unfortunately on the banned list since it wasn’t clear as well as a bowl of mac and cheese. OK – Quick…what do we tell him so he doesn’t refuse the contrast cocktail and still is confident that we’ll bring on his requested foods and drinks of choice? Hmm. Time’s up. We told him he was getting his picture taken that morning, that it was a very special picture because it was of the inside of his body, and that unfortunately he would have to wait until after the picture was taken to eat anything BUT we would write down every food he wanted to eat for him and get it as soon as the picture was taken. He paused, thought about it, thought some more, and then asked for pizza. Out came the list of paper. He helped to hold the pen as we started writing every food he requested. But now, we had to break the news to him about the contrast. We explained that in order to get a really good picture, he needed to drink a cup of apple juice. We did everything we could think of to get him to drink it…all while watching the clock tick by knowing that we were on a schedule. We moved the contrast drink from cup to cup. We changed straws multiple times to find the one that he would drink from. We switched from drinking to squirting a syringe full of the fluid in his mouth. I poured a glass of apple juice to drink alongside. Liam and I would clink glasses and say, “cheers,” something that always gets him excited about drinking (a discovery made the week before in an attempt to get him to drink more fluids). But ultimately he wasn’t drinking fast enough. We moved to Plan B and started collecting everything needed for our day at the hospital. And then all of the sudden he decided to drink…one 6 ml syringe at a time. I can’t even count the number of syringes it took. But Liam drank them one after another and kept asking, “Almost done?” after every one. But he drank it all. Every drop. And we were grateful to have avoided “The Tube.”
At the hospital we were given three syringes of SSKI drops, another really yucky tasting medicine, and told to give one to Liam each day for the next three days. The drops protect his thyroid from the nuclear medicine that’s injected into him for the MIBG scan. Ah. Another thing to worry about in the future…but you can’t think about that right now…you just need to get through the task at hand. Off to the CT scan waiting area and there we were with three other children also waiting to be scanned. It feels a bit like an assembly line, but it’s good because you want to be in a place that treats lots and lots of children so that you’re dealing with the group that has the most experience. On Liam’s chart was a note to change his dressing and remove the steri strips covering the incision from surgery that he had grown attached to and wouldn’t let us remove. And then there was a delay…of 30 minutes…which made us panic knowing that the contrast had to stay in his system in order to be effective and every minute that went by the likelihood increased that he would pee it out. And the whole time this is happening, Liam is happily watching “Rudolph the Red Nosed Reindeer” like he has the three other times he has waited for a CT scan, on the purple-colored portable TV/DVD combo player. He was so relaxed, he actually fell asleep waiting to get his picture taken. And then it was his turn. I carried him into the room with the camera, he was fascinated with it. I explained that he would lie down on a table and go through the hole in the middle and it would take a picture of his whole body. He was even more fascinated. And then I showed him the room filled with people who were going to look at his picture. And then the anesthesiologist injected medicine into one of his tubies and he fell asleep within seconds in my arms. And I could finally cry since Liam was asleep. I placed his body carefully on the scan bed, kissed him, put one of his puppies in his hand, and reminded the nurse to put Bacitracin on his central line when she changed his dressing. Leaving Liam in the hands of others is one of the things I find extremely difficult. It always makes me cry. But today before I left the room, I said a quick prayer to the machine. As soon as the test was over, he was wheeled out on a pink crib-sized hospital bed into the hallway. We helped him to wake up and he immediately wanted to know where the camera was. He doesn’t understand the concept of losing time from anesthesia and at this point, doesn’t know he has been asleep.
So much for the CT, now onto nuclear medicine to get the injection needed for the MIBG scan. We checked in, waited, and then noticed some fine print on one of the many pieces of paper handed to us that said the SSKI drops needed to be in Liam three hours prior to the injection. He was supposed to receive the injection at 2:30. It was around noon. The timing might have worked if there wasn’t a CT scan delay, but now we missed our injection window. What infuriated me is that no one said anything to us about taking the SSKI drops PRIOR to the injection. What infuriated me even more was the snippy receptionist who called back to nuclear medicine to confirm. She said, “The parents didn’t give their kid the drops,” as if we were negligent parents who were trying to cause our son harm. Under normal circumstances, something like a snippy receptionist maybe wouldn’t get to me. Under these circumstances, I was seething. After I explained to her that no one told us he needed the medicine within a certain timeframe, that we didn’t intentionally screw up the timing, that there was a delay in the CT room, and that she might want to think about taking a different approach when dealing with parents of children who are going through this process and already stressed. She wouldn’t look at me again but the person who was working next to her took over, apologized for the frustration and miscommunication, and told us that we couldn’t get the injection for several hours so we might want to take a walk or go to the cafeteria. We went to the cafeteria so that Liam could begin to eat some of the foods listed in writing in scribble on the yellow Post-it now crumpled in Larry’s pocket. We started with French fries, orange juice, and frozen yogurt with chocolate chips. And then he threw up. In the cafeteria. One French fry at a time. And then he wanted more. And more. But they weren’t hot enough. So we had to go back to the grill area , ask for some fresh fries to be made even though there were fries already prepared waiting to be eaten, and hope that the person at the grill would honor Liam’s request. Fortunately, he did. And Liam ate hot French fries while sitting on the ledge of the grill counter where trays are usually pushed, watching the two grill cooks prepare food and asking them every step of the way what they were doing. Watching Liam eat is a beautiful sight.
Back to Nuclear Medicine. We were brought back to a room that Liam and I have been to before. So it wasn’t completely strange to him. But we weren’t in the same chair, so it was a little disconcerting. The injection is delivered in a metal tube in order to protect people handling it from the radioactive material. And again as a parent you’re left with the feeling of, “how can this be right – to inject radioactive material into my precious child?” After the injection, I took Liam into the room with the Scan machine. It’s a big room, but the scanner is even bigger. It takes up almost the entire room from floor to ceiling. And it has two panels that look like small solar panels that are suspended on either side of the bed. Liam explained to me that the bed goes through the hole to take his picture. And then we talked about the funny looking panels that looked like they moved around the bed. He wanted it to take a picture “right now.”
On Thursday morning we were back at nuclear medicine. As I carried Liam into the room, I was directed to a different area behind a linen storage closet where another MIBG scanner was located. Without the benefit of walls to frame the scanner, it looked even bigger and more intimidating. Any change in schedule throws Liam for a loop. He wasn’t prepared to be in a different area, but I showed him it was exactly the same machine. He was very quiet but he was OK. And then he was asleep in my arms. And again I was placing his anesthesia-limp body on a scanner bed and praying. As I was walking out of the room, his nurse asked us where we were going to meet him, a question that confused me since I’ve only met Liam in the same room when the test was over. Did something change? Were things different? “He’s having bone marrows done today,” said his nurse. “No – He’s not,” I said. And then started a “what are you talking about” conversation as Liam is asleep on the table. It’s challenging enough on a daily basis weaving a web of explanations and expectations for Liam to be comfortable of the situation he’s in. To have a surprise thrown at you that I can’t even explain to him because he’s already under anesthesia threatens is challenging. I absolutely hate leaving Liam in a room to be scanned. I hate leaving him. But I did to try to figure out what was going on. Guess what? Someone forgot to call us to tell us there was a change. Thanks for the notice.
After Liam woke up in another room with four bandages covering the spots where a needle was injected into his pelvis to draw bone marrow, he was a bit perplexed about where he was. And when he wanted to know why he had new bandages, I quickly explained that one of the things they needed to do when taking his picture was to take a little blood. And the bandages covered where they took the blood. He was fine. What he didn’t like was discovering a cup sealed to his private parts to collect his pee. It was initially covered with a diaper, but eventually he noticed a tube snaking out from his diaper which led to a whole discussion about what it was and what it was doing. And then what we thought was going to be a short day at the hospital turned into one very long day with urine collection, a blood transfusion (thank you donor), a platelet transfusion (thank you donor) and hours of urine collection. Liam took everything in stride. He was fine with every explanation, was familiar with the transfusion process, and took it all Liam-style…calm, cool and inquisitive. The end of the day was capped off trying to get him to pee. The cup made him nervous and he wouldn’t pee…even though he had been receiving fluids all day. He was so uncomfortable that he had to lie down. But he wouldn’t pee. We explained to him that we needed him to pee in order to leave. We told him it was really important. He made up a song about pee. The nurse increased the amount of fluid he was receiving to try and get things moving. He said he didn’t want to go. We took a walk. Half way to the fish tank, he started peeing and peeing and peeing. It was a good thing.
And now we wait. Today at 10:30 a.m. we have a meeting with Dr. Kushner to go over the test results.