Day 38: Merry Christmas from PICU!

Duplicated from our CaringBridge site for permanent record here.

December 25, 2020, written by Mama

It was an unusual Christmas this year with Mama and Thomas gone from the house, but Christ's birth was celebrated regardless! The family has been unable to attend Mass because of trying so hard to keep delicate Thomas free of any exposure to illnesses. Instead Chris gathered to family to read the Mass readings and make a spiritual communion.

We don't have formal family photos in our finery, or ten thousand photos in general. When I was at the house briefly, I tried to find an outfit to make Thomas cute for Christmas and stood in the closet, realizing I couldn't dress him and the truth is that I cried. I never ordered any gifts for my own family: every time I sat down at the computer and started at Amazon.com, my brain felt paralyzed. Nonetheless, we were completely taken care of by a shower of gifts from friends, loved ones, and even strangers. Our children lack for nothing! 

I want to thank all the gift-givers here publicly because I know I won't be capable of sending proper thank you notes as I was raised to do. I wasn't home to keep track of gifts arriving, many gifts were sent anonymously or from strangers whose name I know but addresses I do not, and I know most people would smack my hand if I tried to write thank you notes from PICU. Still, it's hard for me to accept all this generosity! Thank you, everyone, you truly made our Christmas beautiful and we feel so loved.

And thank you to the three lovely ladies who cooked us a traditional Christmas dinner!

The children have been making ornament crafts that friends and neighbors had dropped off on our doorstep. They have all been such fun occupations of time, including this little Christmas bracelet three-year-old David is very proud of.

So I texted him a picture of my new Christmas bracelet. It is such a simple purple bracelet with gold accents and the word MAMA, but I absolutely love it. It means so much to my heart here in PICU where everyone calls me "Mom."

The children loved playing in the hammocks given to them by sweet, far-away friends. 

Meanwhile, here in the hospital we had David's best day ever! I woke briefly around 4:00 a.m. and watched as our night nurse covered David's sleeping eyes (just in case he woke up) and then sneaked in a table loaded with so many gifts!

When I later showed the children at home via video call all the gifts Thomas received, they remarked, "That's more gifts than he would have received at home!"--and they were correct!

Thomas enjoyed touching and feeling his gifts in his slow motion way. His face remains a flat affect most of the time because it is exhausting to do otherwise. He is not yet speaking or making noise.

Thomas's grandfather sent him a "Sloth Popper," which is like a Nerf gun, but a sloth. It really was a hit and Thomas liked watching me squeeze it for him and send the Nerf ball POPPING across the room.

In fact, if you watch the video, you will see him smile!

That's right . . . THOMAS BEGAN SMILING TODAY! What a Christmas gift to Mama, Daddy, his whole family, and all the staff here! Many nurses and doctors came in throughout the day just to see Thomas smile.

It was a good day medically, also. Because Thomas's kidneys appear to have been "waking up" in these recent days, Nephrology decided he was ready for his first six-hour trial off of continuous dialysis. Thomas's heart rate and blood pressure remained perfectly stable and, for the first time off of dialysis, he did not run a fever. His electrolytes remained stable throughout and he produced more urine. It all could not have gone better.

Because Thomas was unhooked from the machine, I was able to climb into his bed and slide my arm under him to hold him for the first time in 38 days. I asked our nurse to take a photo and he did not even ask Thomas to smile, but, as you can see, Thomas smiled on his own!

We lay together, opened a few Christmas gifts, I read him a story, and then we napped with him in Mama's arms. What a Christmas gift!

Today Thomas also had a trial with his J tube feeding again. After the leaking last time, they tried this time with simple water. As of this writing, he has been receiving a trickle feed of 4 mL per hour for something like eight hours without any leaking from his J tube site. (Last time it was leaking blood significantly within one hour.) This means we can try actual feedings tomorrow!

Thomas wasn't done with us yet, though. The two nurses and I turned our back for such brief moments and this little fella pulled out his own NG tube. I told him I was going to take a photo of his handsome face without his NG tube and look at the huge smile the little scamp gave me!

Normally this would be a simple fix and the nurse would insert a new one within seconds. However, because of Thomas's gastrointestinal surgeries and how his esophagus was sewn to his rerouted duodenum, only Surgery is allowed to insert an NG tube and has to do it under live imaging (ultrasound?). Because we had done the J tube trial all afternoon and it was successful, Surgery said they are willing to try leaving out Thomas's NG tube, even though it had been intended to stay in probably for a week longer. Let's pray all the drainage goes southward like it would in a typical person!

Merry Christmas to everyone!