Day 102: Increased Drainage

Duplicated on our CaringBridge site for permanent record here.

February 27, 2021, written by Mama

102 days in the hospital: 63 in PICU, 28 in the Oncology ward, 11 at In-Patient Rehab!

We are finding some new family rhythm now that Thomas is more stable. I appreciate being home during some significant weekend time to help get the house in order, do projects to prepare for Thomas's homecoming, and see the children (when they're not busy doing school). This weekend marks a milestone only three-and-a-half months coming: I am sleeping at home two nights in a row! I wasn't quite ready to be away from Thomas the entire time and he said he wanted me to join him for dinner, so I came back for a three-hour visit Saturday over the dinner hour.

A very kind lady experiencing her own via dolorosa brought Thomas a new Lego set, which he put together almost 100% by himself. I remember just how recently he could barely grip a pen and the only Legos he could do were telling me which pieces to put together with my hands.

Thomas requested I bring The Golden Children's Bible from home. I believe it was only six weeks ago, when we transferred onto the Heme-Onc floor that Thomas asked me to start reading him the Bible daily. I started with a preschooler Bible that someone gave us, and we finished the whole thing, so then we read the entirety of the TAN children's Bible, and now Thomas wants to launch into the classic Golden. He asks me to read him the Bible so many times per day, at this point almost to the exclusion of anything else. His beautiful heart melts me.

Medical Updates

Adding pectin to Thomas's J tube feeds has had a powerfully wonderful effect in its first 24 hours. By slowing down the food passing through him, his GI symptoms are greatly reduced, which makes all of his life easier, and, most importantly, will allow him to absorb nutrients and gain back the four pounds he lost last week. 

We are watching with acute attention Thomas's critical JP drain which collects pancreatic fluid. After two months of being steady at about about 50 cc per day, it has nearly tripled that in the last 24 hours. We alerted the Surgical team first thing this morning and got word to the head Dr. B-----. Clinically Thomas looks good, so there is no rushing him anywhere, but there is increased talk of doing a fistulagram in this coming week. This increased drainage happened the very day we began praying the novena, so I think it's going in the wrong direction and all I can do is throw up my hands and tell Jesus I trust him and to please take care of it all.

PTSD . . . I remember one day in PICU conversing with a staff member and saying that, "I've been told I'll surely suffer some form of PTSD when all of this is over." Some nurse who knows and loves me said quickly, "No, you already have it now, trust me." Another month or two down the road and I'm sure she's right. 

I've watched another close medical mama friend of mine let me know for years certain moments or days that were super hard for her because she was basically having flashbacks and being very upset and, while I felt sympathy and offered encouragement, I couldn't really envision what she was talking about.

Now I can.

For example, on Friday I started panicking, just outright having a panic attack in the middle of the hospital room where I was alone with Thomas. I had no idea why! The room door was open for flowing air and I realized with the seconds that felt like minutes ticking by that I was hearing something terrible, just repellant, a noise I wanted to stop. What was it?! I realized it was the sound of a hospital bed being pushed down the hall. The beds here have a power driving feature that makes a distinct noise and I realized as my heart raced and breath choked that I've listened to Thomas's bed make that driving sound on more than any lifetime's worth of emergencies. We only ever drove his bed somewhere if he was being rushed to a midnight CT scan, if he was bleeding out, or if he was being run down the hallway to his dozen or so emergency surgeries. I never want to hear a hospital bed again. After the moment passed, I still had so many painful memories flying around in my head for some time.

I am grateful for the improvement that a panic attack had a cause this time and note that it has been a while since I was nightly waking with at least one panic attack out of a dead sleep for no known reason. Thank you, Jesus.

Novena

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

Day 2 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)