Duplicated on our CaringBridge site for permanent record here.
March 18, 2021, written by Mama
121 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 15 back in the Oncology ward.
Today is an unwanted milestone day: Thomas entered the hospital four months ago today for his estimated five-day stay.
Today we found out that instead of being discharged tomorrow, Thomas needs bowel resection surgery, which is scheduled for tomorrow, Friday afternoon.
An Otherwise Heartwarming Day
These last two days have actually been a delight. Thomas's joyous personality has been re-emerging, for reasons unknown. This morning he requested yet another video call with his bigger siblings to tell them about his drain removal. Thomas talked in an animated way, made jokes, and I snapped pictures of some glorious smiles the likes of which I haven't seen in months.
Thomas engaged in Physical Therapy in a way that I've rarely seen or not at all. He was like a man on a mission, he embraced his own goals to get strong. He told me that he wants to learn how to walk to the bathroom. Instead of fighting or refusing PT, he suggested he take some steps and he requested to ride his tricycle for the first time. We were able to find a used adaptive tricycle for purchase in our region, so now he can ride whenever he wants here at the hospital, as well as when he goes home. Later, he was eager to work with OT, did more standing, and then spontaneously stayed on the mat, scooching himself all over for two straight hours to reach his various toys.
At one point I was doing chores with my back to Thomas in bed when I heard him say, "I'm just going to try to kneel on my own." I turned around and saw him TRIUMPHANTLY kneeling on all fours in bed. People, no therapist has ever gotten him even close to this position! I started laughing and screaming with joy!
As usual, Thomas did so many art projects today. He is insatiable about art, just like he was back at home!
Thomas's bowel study was scheduled for one o'clock. Thomas was given Ativan, which made him relaxed and very, very chatty. The nurse and I were amused and delighted at his constant banter throughout the whole scan.
I've had no radiological training, but even with my basic anatomical understanding I could see on the live imaging screen that there was a patent stricture in Thomas's bowel where the contrast dye had a difficult time passing through and then a difficult time draining out. The radiologist then explained that he was seeing a stricture of the left splenic flexure, but that he would send Dr. B---- to talk to me.
Therefore, Chris and I had about two hours to adjust to the idea before Dr. B---- showed up for a lengthy, compassionate conversation with us (Chris whom I was able to get on video call). The strong likelihood is that all of Thomas's feeding intolerance lo these months is due to the stricture, which would have been caused when he was so very sick in PICU. During probably four to six weeks, his blood pressure often plunged dangerously low and he would be yet again put back on hypertensive drugs. Numerous times he had to be resuscitated. When the body experiences dramatically low blood pressure, it preserves itself by drawing blood from less vital organs (like the bowels) to more vital organs (like the heart and lungs). Thus, there was insufficient blood profusion of the bowels and they did not outright die, but they were damaged and scar tissue formed: a tight stricture.
Dr. B---- suspects that much or nearly all or all of Thomas's feeding intolerance and GI symptoms will be alleviated by this surgery. He also says it is outright unsafe for Thomas (who has been resolutely NPO for 7 days now) to resume eating with a stricture because that can lead to a bowel obstruction, obviously very dangerous.
Thomas is scheduled for bowel resection surgery Friday afternoon, on the great Feast of St. Joseph. We place Thomas safely in the hands of this most powerful protector, a man who was chosen by God himself to protect Our Lady and baby Jesus.
Prayer to St. Joseph for Protection of Thomas
Oh, St. Joseph, whose protection is so great, so strong, so prompt before the Throne of God, I place in you all my interests and desires: [that you preserve Thomas's health, that you guide the surgeon's hands, and that you grant peace to our family]. Oh, St. Joseph, do assist me by your powerful intercession and obtain for me from your Divine Son all spiritual blessings through Jesus Christ, Our Lord; so that, having engaged here below your Heavenly power, I may offer my thanksgiving and homage to the most loving of fathers. Oh, St. Joseph, I never weary contemplating you and Jesus asleep in your arms. I dare not approach while He reposes near your heart. Press Him in my name and kiss His fine Head for me, and ask Him to return the Kiss when I draw my dying breath. St. Joseph, patron of departing souls, pray for us. Amen.