Day 104: A Hard Day

Duplicated on our CaringBridge site for permanent record here.

March 1, 2021, written by Mama

104 days in the hospital: 63 in PICU, 28 in the Oncology ward, 13 at In-Patient Rehab!

This update will have to be brief because Thomas had a rough overnight and daytime. His drain output and retching simultaneously increased Friday, Saturday, and Sunday and the whole team is trying to figure out why. Sunday night I slept 10:30 to midnight, after which point Thomas had retching and emesis episodes 8 times and had potty wakings 6 times all before 6:00 a.m. Thomas's sufferings continued all day, he didn't eat by mouth for 24 hours, and in total he had 20 emesis episodes in 18 hours.

He and I are really tired. 

It should go without speaking that Chris offered to sleep at the hospital so I could go home and rest, but he'd tell you that it goes without speaking that I'm stubborn as a mule and am not going to leave Thomas while he is delicate like this.

Thomas's labs actually looked improved today. All his stool cultures came back negative. They ran new labs on his drain output today. His serum white blood count which had risen a smidge last week is coming down, along with the high platelets. Everyone is working hard, but also is stymied.

As I was suspecting, it came out today that Rehab is discussing at what point Thomas's nursing needs and medical care will become so much that it is inappropriate for the Rehab floor. They might bounce Thomas back to the Heme-Onc floor where he can get a max of one hour therapy daily instead of three-and-a-half hours (and with all the fancy equipment and motivating toys).

On a lighter note, when Thomas finally had some brighter moments at the end of the day, he asked to create art and drew two of his favorite subjects from his mind's eye. I post images of comparison just to show how many details he remembered! 

Note that Mr. Rogers' tie is decorated with trollies!

Novena

Source of St. Jude Novena prayer: https://catholicnovenaapp.com/novenas/st-jude-novena/#st-jude-novena

Day 4 Prayer

Intro Prayer

Most holy Apostle, St. Jude, faithful servant and friend of Jesus, the Church honors and invokes you universally, as the patron of difficult cases, of things almost despaired of.

Pray for me, I am so helpless and alone.

Intercede with God for me that He bring visible and speedy help where help is almost despaired of. Come to my assistance in this great need that I may receive the consolation and help of heaven in all my necessities, tribulations, and sufferings, particularly:

for Thomas to experience a complete and obvious self-sealing of his pancreatic leak without needing any surgical intervention. 

and that I may praise God with you and all the saints forever. I promise, O Blessed St. Jude, to be ever mindful of this great favor granted me by God and to always honor you as my special and powerful patron, and to gratefully encourage devotion to you.

Amen.

Concluding Prayer

May the Most Sacred Heart of Jesus be adored, and loved in all the tabernacles until the end of time. Amen.

May the most Sacred Heart of Jesus be praised and glorified now and forever. Amen

St. Jude pray for us and hear our prayers. Amen.

Blessed be the Sacred Heart of Jesus

Blessed be the Immaculate Heart of Mary

Blessed be St. Jude Thaddeus, in all the world and for all Eternity.

(Our Father, Hail Mary)