Duplicated on our CaringBridge site for permanent record here.
March 6, 2021, written by Mama
109 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 3 back in the Oncology ward.
Thomas is having a Daddy Weekend. This is the second time I've spent two nights in a row at home and this time I couldn't easily arrange a Saturday afternoon quick visit with Thomas because our nanny is off this weekend.
Our surgeon Dr. B---- is back on service so we got to have a face-to-face meeting with him today and, I believe, will see him daily for a couple of weeks. I joined the meeting via video call from home. We talked about the plan going forward. I took the opportunity to express just how great the strain is upon our family at this point and that every day longer we stay in the hospital needs to be weighed very carefully with a risk-reward analysis. I cried tears trying to express how I, at least, am definitely not handling this well anymore. My feelings are a lot darker than I share publicly, but Chris certainly bears the brunt of watching the crumbling edifice that is my heart.
Also, we think Thomas is depressed and that his mental health will brighten up considerably back at home. I thought for a long time that Thomas's cheery self was buried under so many narcotics, but Monday marks his very last dose of methadone and I don't think he is simply sedated to a flat affect anymore. It is so hard to bring a smile to his face . . . so rarely do I see a flash of happiness.
Over Friday night, Thomas suffered the most gastrointestinal pain we've seen so far. His appetite comes and goes, and Saturday was a day his dad could not get him to eat. He finally wanted some chicken soup in the mid-afternoon, ate a few spoonfuls, and that was it. Some days he is achieving 30% of his food by mouth (still not sufficient), others nothing at all. Meanwhile, we don't know how we will get his body to tolerate J tube feedings.
Thomas can't come home safely if he has no stable way to receive 100% of his nutrition.
The GI pain began to subside this afternoon, so Thomas wanted to visit the play room where he painted a piggy bank. However, it was mostly a quiet, lay-around day because of his pain.
Back at home, I caught up on 5 loads of laundry, picked up an embarrassing amount of detritus on our property that our neighbors have been forced to stare at, making a trip to the grocery store, planning school for the week, cleaning, organizing so many things, and doing administrative paperwork for the home.
We tried out a new bumblebee game given to Thomas that was really quite enjoyable for us! It was like Jenga but for tiny tots and I think Thomas will like playing it. Thank you to the sweet neighbor who left us a gift bag with this and other goodies.
I enjoyed catching a scene of Joseph (8) teaching David (3) to play chess: he did an admirable job, using childlike descriptions of how each piece moves. I was really quite impressed with his teaching ability!
Our neighborhood rec club is hosting a Very Loud Rock Concert tonight (and not soft rock the likes of which you might anticipate for the homeowners in this neighborhood). It is so loud in our home, I almost feel like we are attending the concert ourselves . . . not that you could drag me to listen to this offensive stuff. We had no other defense but to make this a spontaneous movie night and stay up late singing a musical together to drown out the rock concert!
Novena
Source of St. Jude Novena prayer: https://catholicnovenaapp.com/novenas/st-jude-novena/#st-jude-novena
Day 9 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)
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