Duplicated on our CaringBridge site for permanent record here.
Mama's Birthday, February 2, 2021, written by Mama
77 days in the hospital: 63 in PICU, 14 in the Oncology ward
Our family so greatly appreciates all your concern and increased prayers during these frightening two days of back-to-back bleeding incidents. The team thinks that probably Thomas is fine, all internal bleeding is probably concluded, and that we are just prudently watching and waiting.
To a mother who had to witness especially the gastrointestinal bleed, I am not a good enough writer to capture the degree of emotional whiplash I am experiencing having thought on Monday 3:30 that I might be watching my son bleed to death and then the joyous attitude of the team come Tuesday morning.
The Bleeding Incidents Analyzed
After the afternoon bleed, they tracked Thomas's hemoglobin every 6 hours. At 10:00 p.m., it appeared to have fallen 2 points from 12 to 10, which meant an automatic ticket to an emergency CT-Angiogram. The nurses woke me and I had five minutes to rouse, get Tom ready, and be rolling down the brightly lit hall.
Thomas is such a docile lamb about the sufferings he has to endure. Each of these two nights he's been woken to go for an emergency CT, I have rustled him awake, and told him we needed to go for a picture of his belly to make sure he was not bleeding inside. His reply? "Okay, Mama." I put on his mask, we walk 10 minutes through the halls, him rolling along in his bed, and he tolerates being picked up (still delicate for him) by strangers and placed on the very hard, very narrow CT bed, whooshed in and out of the scary machine. Not a protest. We go back to the room, I tuck him in, I read him a story, and he's asleep in five minutes.
Today we had Wound Care consult yet again on an IV infiltration wound (probably 1.5" diameter) that has been on his arm for two and a half months without healing. When they changed the bandage, he bled strongly for 20 minutes: but he just watched calmly. (Yes, they're doing an arm ultrasound tomorrow, Surgery is being consulted, Plastics might be taking over.)
Such a trusting lamb.
Well, the CT overnight turned out to be an unnecessary test and radiation exposure, but at least it showed definitively that Thomas had no active bleeding and no ductal fistula. His hemoglobin labs ended up being something like 11, 12, 10, 10, 10, 10, 10 . . . so the team believes the 12 was a false high. Take the 12 out of the line-up and Thomas showed no signs of bleeding internally and wouldn't have gone for the CT.
We won't ever know what happened. Surgery thinks likely these were two unrelated bleeding events, 24 hours apart. The JP drain probably represented an old large clot breaking free. Normally the body would reabsorb that but because he had a drain right there, the clot exited. Today the surgeons swapped out his bulb drain on suction and replaced it with a bile bag on gravity, one step closer to not having a drain at all.
Surgery thinks the GI bleed was likely a marginal ulcer, which I'm told is particularly common in jejunal surgeries. Even if that is what Tom had and it continued bleeding, the first line treatment would be repeated blood transfusions while the body healed itself. Thomas received one transfusion, and maybe the body has healed or is healing itself. There has been no subsequent bleeding for 28 hours so far. Surgery wanted to wait until Wednesday morning to keep observing and then would resume considering transferring Thomas to In-Patient Rehab.
My Birthday
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| Thomas asleep early in the morning |
Upon leaving Monday evening, Chris had whispered to Thomas to remember to wish me a happy birthday the next morning. Knowing five-year-olds, I had zero expectation. But come 6:30 in the morning as light dawned, I heard him say from his bed, "Mama?"
"Yes, honey?"
"Happy birthday, Mama!"
Then later when he heard me have a one-sided conversation with a sibling at home, he could tell the sibling had not wished me a happy birthday, so he asked to borrow my phone. He brought it shakily as close to his mouth as he could, said in a loud stage whisper, "You forgot to tell Mama happy birthday!" Then he handed it back to me and said in a normal voice, as if I hadn't heard him whispering, "Here, Mama, I'm all done now."
He also saw me putting on makeup, which I rarely have time to do, and he said, "Mama, I think you look pretty every day without makeup." So there was my second birthday gift.
Considering that he also thinks I have just turned 17, I doubt the reliability of his compliments about age or beauty, but I'll take them anyway.
More Autonomy
Today I discovered we parents have even more autonomy: we recently earned permission to transfer Thomas to and from his wheelchair as we wish, I can run his feed pump and give him enteral medicines, and as of today, Dad and I have permission to take him anywhere in the hospital.
I started off by taking him in his wheelchair and pushing his pole for our first solo walk! It may seem so small, but one has to remember that I'm walking around astonished that they trust me to handle an emergency when I think he could bust out bleeding internally at any second, even if I have removed him from the safety net of his room. This exercise of my courage is very important in my own "rehab" getting ready to go home.
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| Mama and Thomas's First Solo Walk |
In the evening before bed, I washed Thomas's hair well with shampoo and water, which gave me such a good feeling as a mother, letting me have more 'ownership' of our boy. The last time I bathed him was the night before his primary surgery and I remember then thinking how nice it would be when I could bathe him again maybe one whole week later when we would be home. For two and half months, all he has had are baths with glorified baby wipes and not one single hair washing.
Solids
Even after all the fear of the last few days--pleural effusion, two bleeds--this morning Surgery waltzed in and happily granted Thomas permission to eat solids, on the eighth day after he was first cleared for clear liquids.
At Rounds, Nutrition mentioned that after he is exceeding 100 calories per day by mouth, I need to start tracking the data so that Nutrition can daily adjust his J tube feeds which provide 100% of his calories. I replied, "He's already exceeding that!"
Thus today I began tracking the data to submit on a daily hospital form, which I suspect will be a new part of my life for a long time.
For kicks, I share that today Thomas ate cumulatively:
- Pirate Booty, 3/4 ounce (100 calories)
- 2 flat pretzel crisps with 1/2 tsp no-added sugar peanut butter
- 8 oz lemonade (0.5 g sugar) + 8 oz water
- 1/2 hard boiled egg white
- strawberries: 1.5 large
- veggie chips: 6
- broccoli floret: 1
- Campbell's Chicken Noodle Soup with Noodles: 2 sips
- Cheese Quesadilla: 1 bite
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| Very first solid food |
Thomas and I ate breakfast together at one table, Thomas in his wheelchair. Family communion!
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| Peanut butter cracker |
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| Watching the creek out the window |
The afternoon was quieter, with visits from OT, from Respiratory, from Art Therapy, from Nephrology, and from the doctor who runs the Rehab center; my weekly counseling session; and rounding out the day with a little bit of Mr. Rogers--the only show a certain someone has watched for weeks.
Our big goal tonight is to sleep overnight without having any emergency scans or tests!
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