Duplicated on our CaringBridge site for permanent record here.
March 5, 2021, written by Mama
108 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 2 back in the Oncology ward.
This morning I discovered very handy-dandy hooks left by a previous occupant on which I could suspend our crucifix in direct view of Thomas's bed.
We are living on the Heme-Onc floor because the nursing staff here knows Thomas's case very well, which improves quality of care. Bonus points for the fact that Heme-Onc is probably the cleanest floor in the entire hospital, which means less chance of catching a bug. However, Heme-Onc doesn't "own" Thomas during this stay, so Rounding is--yet again--a different process. The whole team of multiple disciplines does not stop at our door each morning to have a big discussion. Instead, the disciplines visit Thomas daily at random times in the morning: The Surgical Resident comes by like clockwork at 6:00 a.m. to collect information, and then Surgery comes by as a group later in the morning to discuss. GI comes by once and Palliative Care (managing all his narcotics) comes by once. Nutrition comes by to collect his food tracking sheets and then our Dietician calls us at a random time to give me feedback (e.g., calorie counts).
Each discipline looks at my detailed tracking sheets which today I was told are more helpful than looking at his chart.
I'm trying to give structure to our days and do our own PT and OT. This morning, even though Thomas was still hooked up to the IV pole which makes movement a hassle, I put him on the floor mat so we could do water play. We used bubble bath to wash his animals and then his cars, and if that's not fun, I don't know what is.
Then I booked us an hour in the play room where Thomas built a puzzle and created his own kite.
When Thomas announced that he wanted me to push him around the room to look at toys, I answered nonchalantly, "You're capable of doing that, honey," and then I sat on my very helpful hands and pretended to appear busy. Little Thomas pushed himself around, maneuvering, playing with toys, even playing basketball. I reflect on how this child of mine was probably my most independent of the six, yet he hasn't had any independent time in four months now. At one point, he wheeled past me and slightly ran into my chair, jamming his wheelchair rather stuck. I offered to help and he said, "No, Mama, I've got it. I'm strong enough to get unstuck." That's the confidence we are trying to build!
After Thomas's naptime, our friends the S--- family drove by in a planned event with chalk spray paint on their van (I'd never heard of this product!) and helium balloons. Dad and kids caught wind of the event and joined the drive-by well wishes. Believe me, we are so happy not to be forgotten by visitors after all this time!
Our family appreciates greatly the gifts we still receive, as they both bring useful or joyful things into our life and they help us feel loved and remembered during this hard time. Just this week, we still have meals being delivered to our home plus several people sent us e-gift certificates to local restaurants. Someone sent me a book randomly, just thinking I would probably like it, and she was right: I've been glued! We received Lourdes water (which we are blessing Thomas with), a very meaningful blessed rosary, a stuffed animal, and sloth socks (yes!). We also had our first meeting with a cancer charity (founded after this family's child died) which is going to be doing a Very Special Project for Thomas. I think of the individual gift-givers often, even at such mundane times as each time I shower and I use the bottle of shampoo a gal-pal gave me, knowing I was getting by on industrial hospital shampoo. We pray for you all.
Chris and I are swapping places, with me heading home for Friday Family Movie Night: Pride and Prejudice for the girls and The Reluctant Saint for boys.
Medical Updates
This weekend should be quiet as our goals are to let the higher dose of Clonidine build up in Thomas's system and to make no other changes. Thomas is doing so well with a normal number of bowel movements and exceedingly little retching. His sleep is so much better overnight!
The hope is to get Thomas very stable with GI symptoms and then reintroduce J feedings next week.
Novena
Source of St. Jude Novena prayer: https://catholicnovenaapp.com/novenas/st-jude-novena/#st-jude-novena
Day 8 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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