Duplicated on our CaringBridge site for permanent record here.
March 3, 2021, written by Mama
106 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab!
Today I cried in hidden moments while putting on a cheerful, confident face for Thomas because that is what is best for him, and it must have worked because he thinks it is a wonderful thing that we've left Rehab not for home but back to the Heme-Onc floor. "It will be good to see all my favorite nurses!"
I caught up on some sleep last night at home, but it turns out I would have slept well at the hospital, too: Because we asked to stop Thomas receiving any tube feeding, he slept pretty darn well, just rousing for normal potty wakings (can't be helped when receiving TPN!).
I cried in bed before falling asleep, I cried in the early morning when talking about this transfer to the other children at home, and I cried on my drive back to the hospital. Then I went in and encouraged Thomas yet again about how, "Your body is now strong enough to be safe at home! Now all we have to do is let the doctors figure out how you can eat enough safely and gain weight--no more diarrhea, no more vomiting--and then your belly will be safe enough to go home! The best place for the doctors to get your belly fixed up is on the 11th floor, so that's where we're going next!"
Thomas had such a remarkably good overnight, that the Rehab and GI teams both felt that actually it would be reasonable to keep Thomas in Rehab and discharge him only two days hence on Friday. The whole plan came together, even with the Case Manager jumping into the meeting, and we were suddenly faced with the glorious possibility of bringing our boy home!
We got to enjoy that triumph for one hour, before the team reconvened having talked to Surgery, which is the third big discipline taking care of Thomas and the one who trumps all the others. Surgery absolutely does not feel comfortable discharging Thomas, so we were told we would be moving back to the Heme-Onc floor and reference was made to "a couple more weeks."
These conversations occur in front of our five-year-old, who does listen, and for his sake we have to navigate them exuding confident cheerfulness when that is the furthest from our true emotions.
Thomas got to have one last full day of therapy sessions, all of which he could participate in vibrantly today because the team finally stopped tube feedings. Thomas had slept well and wasn't feeling sick, plus he ate foods by mouth all day long, so he felt great. If only this had been the state of affairs over the last few days and the situation might be different now.
Thomas rode his tricycle three whole loops around the ward . . .
He enjoyed the best time at music therapy . . .
Today was a double-ouch day and it will continue to be a double-ouch day weekly. Each week, Thomas is scheduled to have the Hollister device securing his surgical drain switched out . . . but the surgeon also is insisting for safety that Thomas have the two sutures removed and two new ones placed each week. The need for this drain not to move one more millimeter is that important. These are big, deep sutures using something that looks like a fish hook, and the procedure is a lot more ouchy than the numerous times I've seen my kids have eyebrow or chin cuts sutured. Last week when Thomas was sutured, he was screaming in pain the whole time. This week went better because they used lidocaine, but, believe me, it's not fun for our boy to go through this.
Then today is also the day each week when Thomas's port has to be de-accessed and re-accessed. Thomas is a pro at it by now, after having endured it every three weeks for six months and then about 16 times over the last four months.
For two weeks at Rehab, we had listened and observed each time a kid graduated. The nurse would announce over the PA system that so-and-so had "met her goals! and would be going home! Please, everyone step to your doorways so you can watch so-and-so make the loop around the floor!" There was cheering and it was so fun. Each time, I would encourage Thomas that his day was coming soon and when his body was strong enough, he would get to walk or push his wheelchair around the Rehab loop before going home.
Well, when you bounce out of Rehab back to Surgical Service, you don't get that ceremony and Mama was pretty silently choked up walking off the floor with nothing except for carrying the still-floating helium balloons given to Thomas in celebration of him leaving Heme-Onc two weeks ago.
Time was drawing close to Thomas's bedtime and he actually did fall asleep at 6:00 p.m. for what would have been the night for him. However, we finally got called up to the 11th floor at 6:30, so off we went and we were placed in the tiniest hospital room I've seen yet. It was so tiny that if I stood to the left or right of the bed, I could touch the bed with one hand and the opposite wall with the other. I was not going to complain (because what could I do?) and Chris and I agreed this was a good Lenten sacrifice . . . when perhaps God took pity on us. A nurse came in and said, "Don't unpack yet! There is another family discharging from a big room. If you can wait an hour, it's all yours." I said absolutely yes!
When it was now eight o'clock before we were let into the room, I was amazed: this room is the largest we've been in so far, such that I feel like we could hold a ballroom dance in here. The picture below does not do it justice, but I'd need to use a fisheye lens for that. My sleeping couch is more than ten feet away from Thomas's bed, which actually feels a little disconcerting to be so distant from my baby!
What are the blessings of being here?
- By clearing our schedule of nearly all therapies, Thomas can focus on eating solid foods. Our hope is to do a grand experiment: abandon tube feedings, throw all our effort into eating by mouth, and fill in the gap with TPN (which he can go home on!). The Rehab schedule is way too intense to accommodate just how much sheer time Thomas has to be allowed to be nibbling food all day long.
- Surgery can visit us here more often and more quickly. They can focus on Thomas's nutrition problems and decide what to do about his leaky pancreas. Rehab on the fourth floor is actually separate legal entity (its own hospital), which slows down all decision making and consultations with specialties like Surgery. Now we are "back at Levine's," so this should go faster.
It was with dark humor that I chuckled when we got to the 11th floor and my cell phone rang: the hospital was calling me, now that "Thomas was a new admission," requesting my permission to treat him and to bill our insurance. Yes, go ahead, let's start that . . .
I've blessed our new hospital room with holy water and blessed salt. I prayed for God to bless our location, bless our time spent here, and bless our son.
Please, God, get us home.
Novena
Source of St. Jude Novena prayer: https://catholicnovenaapp.com/novenas/st-jude-novena/#st-jude-novena
Day 6 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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