Home, sweet home

We have been absent from our family blog for one month exactly as our son Thomas was diagnosed with cancer. We were publishing over at CaringBridge (https://www.caringbridge.org/visit/thomaslauer/), but are now going to try to bring the two together seamlessly in order to continue the family blog I have written for 14 years. This blog post is copied from CaringBridge and is being published retroactively. Please subscribe to our family blog to receive updates as I publish!

We are back at home, sweet home with Thomas!

Thank you so much to my sister-in-law Courtney who was able to stay through surgery day. She came on a moment's notice, drove two days across country, and even missed her daughter's 18th birthday.

I did not know what to expect after Thomas's surgery, although the surgeon had explain widely variable reactions. While Thomas did not experience any actual complications, boy, that felt like a rough night for this Newbie Medical Mom.

Once Tom awoke from anesthesia, he did not fall asleep till 1:00 a.m., so I had been awake for 21 hours at that point. Overnight I got three hours of sleep in short bursts--although all throughout I kept thinking how grateful I am because I would never want to be somewhere else than by his side suffering: no glorious career, nowhere else.

Thomas's pain was not well-enough controlled and he had a post-OP fever (normal, not infection) such that he soaked his pillow in sweat all night. His pain would made his heart rate go up in the high 180s, so the alarms blared much of the night. It took the nurse and I requesting until morning and a new resident on call to be given something stronger than over-the-counter Tylenol at the standard kid dose. I don't know everything: maybe it was thought Thomas had so much residual pain meds in his system from surgery that he really did need only regular Tylenol.

It was sorrowful to watch his loss of ignorance: now he sees this cancer journey is not all special attention and gifts. He did not smile all night, he cried a lot, and he kicked me and the nurse while throwing tantrums: something he would normally never do.

When our surgeon's team of doctors came by on rounds in the morning, they were not happy that Thomas's pain had been left uncontrolled. They helped train me that next time, I should have called my surgeon in the middle of the night or the oncologist in the middle of the night to get help. I'm not angry. I am learning lessons and about how to be Thomas's advocate.

Once Thomas was given one-time oxycodone in the morning, he was able to calm down. He smiled big for the first time when he learned that Daddy had purchased Curious George Seqson 3 on Amazon Streaming for us. He began talking at length to me about all the things important to a four-year-old (how does electricity travel, how he thinks he would build a bridge, etc.). He was still nearly silent when all the staff would talk to him, which is not his norm.

During surgery while Thomas was asleep, the staff gave his stuffed lion all the same paraphernalia Thomas would wake up with: blood pressure cuff, bandage over an incision, and an IV. This is done because it normalizes the medical items for a lot of children. However, when Thomas noticed in the morning, he instructed me to remove Lion's IV. He really did not want Lion hurt, so I removed the tape and IV as gingerly as if Lion were alive, as Thomas observed like a watchful parent.

Thomas is moving extremely gingerly (5-10 minutes to get onto the potty or off of the potty), and he is so glad to be home with the next pain medications and being allowed to nap.

Now we rest and wait. Thomas is not supposed to play on playground equipment or ride his bike--really anything jostling or a fall risk--for three weeks because of the danger of tumor spillage.

Thank you for all your prayers.