Duplicated on our CaringBridge site for permanent record here.
March 2, 2021, written by Mama
105 days in the hospital: 63 in PICU, 28 in the Oncology ward, 14 at In-Patient Rehab!
On what should have been Thomas's discharge date, we have been told officially that tomorrow morning Thomas is being bounced out of Rehab back to another floor under the Surgical Service.
Last night was even harder than the night before. Thomas had 21 wakings, 15 of which were for retching and emesis episodes lasting about five minutes each. At the worst of it after midnight, they were often occurring every 15 minutes. Just so you understand, outside of PICU, it is the parent responsible for all that care, not a nurse who is caring for four patients and can't even hear all the vomiting and crying.
Chris cleared his calendar to stay with us all day to help me because I've now gone 48 without sleeping and I knew we'd be having some big conversations with the team today.
Chris attended therapies with Thomas, we took Thomas for a tour of the hospital library, and our priest met with us to give Thomas a blessing.
Thomas does not seem to tolerate tube feedings at all, so tonight the order is suspended, meaning he is receiving only TPN, no formula through his J tube.
I have come home to try to sleep and will return bright and early to pack up our room. My heart is heavy about Thomas going "deeper back in" to the hospital instead of triumphantly walking out of the hospital toward home. What we are hoping is that the Surgical Service taking Thomas back under its care is our fastest route home because Thomas simply must find a way to receive his nutrition functionally. He can come home without being able to walk, but he can't come home if he is losing weight daily (which he is) and cannot eat.
I have much, much I wish to say, but my lack of sleep and weary heart means it's not wise for me to philosophize any more about this situation without just signing off and going to sleep as soon as possible.
Novena
Source of St. Jude Novena prayer: https://catholicnovenaapp.com/novenas/st-jude-novena/#st-jude-novena
Day 5 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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