We were blessed to spend Easter as a family united together and, even though it was quite challenging in new ways because Thomas is so newly home from the hospital, it was on my mind frequently that we left behind a hospital full of children whose parents would wish them home.
At the end of our Easter photos is a quick medical update.
Good Friday
With no prompting from us, Thomas followed along and turned every single page in his Stations of the Cross booklet, studying the drawing as we prayed Stations.
Praying Stations of the Cross at home
A friend sent us a kit of Easter triduum arts and crafts (thank you!), so while the older children were observing near silence from noon to 3:00 to honor Our Lord's time on the Cross, we kept the littlest boys busy with quiet, holy activities.
Easter crafts
Easter crafts
Easter crafts
We had all made it to Confession this week and at three o'clock, another adult was able to take our oldest children to the Mass, but Chris stayed home to help me with Thomas.
Holy Saturday
Dying Easter eggs
Brotherly fun
I would normally not plan a social event for busy Holy Saturday, nor would I have chosen to host a social event when we'd been home from the hospital for less than a week! But desperate times call for desperate measures . . . and our dear friends are moving across the country, so we wanted to spend one last time together.
For all these months in the hospital, Thomas has talked about wanting to play again with his little friend J----, whom he used to play with at the playground each Thursday. Thomas drew a picture of a knight in shining armor for his little friend and then asked to wait for him in the middle of our cul-de-sac.
Drawing for his friend
Goodbye drawing for his friend
Waiting for his friend
Crafting with his friend
Fun with little boys
Fun with little boys
Thomas still needs so much rest and falls asleep early!
Thomas asleep early
Much to the dismay of the children, I asked that nobody in the family attend Easter Vigil this year, as the priest told us that the Traditional Latin Mass would be something like five hours long this year. As it was, sweet Thomas had a rough night and needed us more than hourly all night long, so we parents were very, very tired Easter morning and I was grateful my husband had stayed home with me.
Easter Sunday
Please watch a cartoon and let Mama sleep more.
Easter basket time
Easter basket time
Easter basket time
Easter basket time
Easter basket time
Easter table
Thomas had his emergency Confirmation and First Holy Communion the week after his cancer diagnosis in June 2020. He got to go to Mass a few more times before I began keeping him and I home during cold and flu season while he was immunocompromised. On Easter, we attended Mass as a whole family for the first time in nearly nine months. Thomas combed his hair to look good.
We visited with friends after Mass, and I cried with a few, before going home for our Easter egg hunt. This year, I purchased 100 eggs that came in only 6 colors and assigned one color per child. I do not know why I have not done this years ago, as there was no fighting. Instead of the egg hunt lasting about 60 maniacal seconds as the children race around, elbowing each other out of the way, the egg hunt lasted a lovely seven minutes because each child could only pick up his or her own color. John was Thomas's buddy and it worked out great. Also, because Thomas can have only reduced sugar, I de-emphasized candy this year, stuffing the eggs with some candy, but also mini glow sticks, fabulous stickers, erasers, and those fun little tablets one soaks in water to grow a sponge shaped like an animal. (I ordered all this via Amazon while still in the hospital, having no idea if Thomas would be home for Easter or not.)
Also, one and only one egg contained a stick-on mustache!
This is the kind of video only a grandparent would love, but after four and a half months in the hospital, I don't begrudge myself filming all seven minutes of egg hunting.
I admit it, I was completely exhausted to the bone from the night before, Thomas's medical care all day, and our very first outing as a family (for which I had to bring all of Thomas's foods and two o'clock medications). Everyone pitched in to make the supper happen and, even though we tried to "just buy all of it," it still took ninety minutes to prepare.
Honeybaked ham and turkey
Honeybaked cornbread stuffing
Homemade sweet potato casserole, made by our 10-year-old
Homemade fettucine Alfredo, made by our 14-year-old
Homemade rice-a-roni, made by our 12-year-old
Sr. Shubert dinner rolls
Homemade strawberry shortcake, made by Mama (tasted bad, had to throw it away!)
I didn't even get everything in nice serving dishes, I think the pasta was served in the metal cooking pot, and we ate on paper plates that weren't even cute Easter decorative . . . BUT WE WERE TOGETHER!
Medical Updates
On the eighth day, I achieved feeling comfortable running Thomas's TPN. While I didn't want to learn TPN in the first place, now we really do not need nursing care to come in just for that purpose.
Friday through Sunday: trained by nurses at the hospital
Monday: trained by Atrium Health at Home Infusion nurse who visited the hospital
Tuesday: trained by Atrium Health at Home Infusion nurse who visited our home
Wednesday: I was nervous, so I called yesterday's nurse and talked it through with her while I set up TPN
Thursday: Atrium Health at Home Infusion sent me a second nurse for a bonus visit to supervise me again
Friday: I felt confident!
I am keeping diligent notes all day long, which I carry around in a tiny purse slung on my person. It comes off me only when I'm sleeping. My cell phone alarm rings throughout the night to wake me for dispensing medications.
Thomas has been averaging 400-500 calories by mouth each day (although today hit a record 800-calorie day!) and has achieved his goal rate of 60 mL/hour of J tube feeds. He has already gained about three pounds. Therefore, the Gastroenterologist has planned Tuesday (tomorrow) to be his last day of TPN. After that, he will still receive IV fluids for seven more days (which I will still set up and run like TPN). This means Thomas will be off his lines all day long! He will receive fluids for 10 hours overnight. I will track his food by mouth all day, then at night do the calculation and run however much J tube feeds he needs overnight to reach his calorie goal. Throughout, his blood labs are being followed closely by GI.
Physical Therapy is going well and Thomas is making small gains every day. Sparks of his humorous and joyful personality are showing through "the quietness" with more and more frequency.
Thank you, God, for one more day, none of which are guaranteed us.
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