Our Five Ring Circus: The Reason Behind My Absence

Sunday, January 24, 2021

The Reason Behind My Absence

Down syndrome

I've been MIA. For a while, actually. First it was extreme morning sickness that took over my life, followed by a needy new baby and juggling five kids, then Covid, and now we're facing a scary medical issue with Liam. I keep hoping life will calm down enough to let me focus on my blog again, but family comes first. Always.

I thought waiting for the test results after Liam was born was the most difficult thing we've gone through as parents. That really isn't true though. See, in my heart, I already knew he had Down syndrome, so the results of that test weren't really a big surprise. The waiting now is agonizing.

We have been so lucky with Liam's good health. Other than Celiac Disease, which runs in Grant's family, Liam doesn't have any of the common conditions associated with Down syndrome. He rarely gets sick, he has only had a few ear infections, he doesn't need glasses, he never needed tubes in his ears, he doesn't have low tone, he doesn't have sleep apnea, and he doesn't have a heart condition, thyroid disorder, or stomach issues. Liam has only had a few respiratory illnesses that required breathing treatments, only two medical procedures (scopes under anesthesia), and only two hospital stays to see why he wasn't gaining weight (everything was normal) and when he had cellulitis following a minor nose injury. Liam is healthy, and incredibly energetic and strong. In the grand scheme of things, we really have been lucky...until now.

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It all began at Liam's 7 year well exam at the end of September. Liam's pediatrician was doing his physical exam when she noticed that he had a rather large swollen lymph node in his neck. We had no idea it was swollen, and he hadn't been sick since February. That was the last time he saw a medical provider, as well. So sometime between the end of February and the end of September, this swollen lymph node popped up for no known reason.

This may not seem like a big deal, but the dreaded c word is always a fear at every well exam. Children who have Down syndrome are more likely to develop leukemia than their peers, but they are also more likely to respond to treatment. On the other hand, people who have Down syndrome are LESS likely to develop some other type of cancers, especially those that cause tumors. Either way, the reality for a parent of a child with Down syndrome, is answering those leukemia screening questions at every well exam. And this time, Liam's swollen lymph node was a red flag. 

We were advised to give it some time to go away, but if it was still there after that time, to come back for further screening. Sure enough, it never disappeared. Liam had his yearly appointment at the Down syndrome center in November, where he gets yearly lab work, so we held off until that appointment.

At that appointment, his doctor was concerned about the size of the lymph node. He ordered the usual lab work, along with an ultrasound on his neck. The lab tech did the ultrasound, then came back in for a few more pictures. 

That appointment was a few days before Thanksgiving, so we had to wait a little bit longer for the results. That was our first excruciating wait. His bloodwork looked perfect, which was a relief, but the ultrasound definitely showed an enlarged lymph node. From there, we were told to schedule a visit with Liam's ENT, and they got us in very quickly.

At Liam's ENT appointment, it was determined that Liam would need surgery so they could send a sample off for a biopsy. Due to Covid restrictions and limited scheduling, the soonest surgery date available with Liam's ENT was January 19th. So we nervously waited, Liam rocked his pre-surgery Covid test by smiling his way through it, and we headed to the hospital very early on Tuesday morning for the surgery.

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Liam was the third surgery on the schedule, so everything moved quickly. We were checked in by 7, and Liam was taken back for his pre-surgery physical and prep a few minutes later. Liam was in a great mood, and kept hugging all the nurses. He is always such a happy, loving kid!

As we waited to speak to the anesthesiologist and for the ENT to mark the surgical site, we did our best to keep Liam busy and calm our nerves. Liam easily kept himself occupied by watching his tablet, and didn't complain at all. He did get a bit cold, so the nurse brought him blankets right out of the warmer, so he was happy and comfortable. Before we knew it, Liam was marked for surgery, and it was almost go time. 

The last thing he had to do before surgery was drink the "happy juice." It's basically a medication that calms him before he gets anesthesia. He was not a fan of the taste, and spit a lot of it back at us. We weren't quite sure it was going to work as time ticked by, but it sure did! Liam was sitting on the floor watching his tablet, and just fell over to the side, and sprawled out on the floor with a dazed look on his face. We moved him to the bed, and he started laughing hysterically, then got very sleepy. The nurse popped her head in, and said it was time to go.

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Due to restrictions, Liam was unable to take a comfort object into the OR with him. The anesthesiologists came to get him, and we walked down the hall beside his bed. My dad bought Liam a Little Baby Bum stuffed star that sang Twinkle Twinkle Little Star, and one of the anesthesiologists joked that he better start working on his falsetto to take over when we took the toy with us. 

It was so tough to leave Liam in the hands of the medical staff and walk away. He was so out of it, and didn't even seem to realize that we kissed him goodbye. As we walked away with tears in our eyes, we could hear the anesthesiologist singing to him the entire way down the hallway to the OR. 

Grant and I found seats in the surgical waiting room, and spent the entire time worrying. We tried to stay occupied with social media and Netflix, but no such luck. Instead, we found ourselves watching the monitor to see when Liam made it into the OR and when surgery began. We were both silent, but I think we were just praying for our sweet boy and his surgical team.

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As the time ticked away while Liam was in surgery, we became more nervous. I finally noticed a message from a friend from school, whom I hadn't seen since graduation. She said she had the privilege of meeting Liam in the OR as his surgical nurse, and that he did great. I let out the biggest sigh of relief! 

A while later, Liam's ENT came in to talk to us. He reiterated the fact that Liam did great during surgery. They were hoping to go in and find an enlarged lymph node, which would most likely indicate an infection of some sort, but instead they found a mass. They were able to remove it all, but it was about a inch long. They sent it to the lab for a biopsy, and now we're experiencing the longest, scariest, most stressful wait we have ever had to deal with.

We had to wait a bit longer to see Liam, but the nurse eventually came to get me so I could sit with him in the first recovery room. As soon as I saw him, I started to cry. Liam is our first child to have surgery, and the incision was quite a bit bigger than I expected.

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After Liam stabilized, he was moved to the second recovery room, and Grant was able to join us. Liam was having a hard time waking up from anesthesia, but he eventually did, and was very angry. Once the anesthesia wore off, Liam bounced back like he never even had surgery. 

Liam tried to remove the IV on his own, and drank some apple juice, so we got the go ahead to leave. Grant offered to carry him, but he said no, and just walked down the hall beside him, holding his hand. He waved to all the nurses, and Grant took him to the car while I picked up his pain medication from the hospital pharmacy.

We spent the remainder of the day resting at home. Liam took a brief nap, but you would never even know he had surgery, other than the large incision on his neck. He didn't need any pain medication that day or the next, but it hit him on Thursday. Apparently the day two post-surgery slump is a thing! He's still energetic, and the incision is healing very well, but his neck is swollen. He is recovering well, though.

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So here we are. Liam is 5 days post-op, and has to remain at home until Wednesday. He can go back to school on Wednesday, and gradually ease into physical activity. We're just waiting very impatiently and nervously for those biopsy results, and praying that it's just a benign growth so we can put this experience behind us!

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Down syndrome & Surgery - The Reason Behind My Absence

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