Duplicated on our CaringBridge site for permanent record here.
January 31, 2021, written by Mama
75 days in the hospital: 63 in PICU, 12 in the Oncology ward
Today began on such a bright note, our whole team cheering, laughing, and sharing merriment at so many positive steps, but has ended with some real concern, which makes it challenging from a writing perspective.
Around 6:30 p.m., Thomas either broke off an old clot, which would be the better news, or he began bleeding again, so we would appreciate prayers for what will probably be a long night of Dad praying at home and Mama watching closely at bedside.
Pleural Effusion Nearly Gone
Let me take a few steps back and thank you all for your prayers: Thomas's pleural effusion nearly disappeared overnight! After scheduling the minor surgery to install a long-term PleurX chest tube this coming Monday, Thomas had another chest X ray on Sunday morning. I've seen about 60 such X rays for Thomas, so I don't know nothin' anymore, and even I could see it looked startlingly clear with good borders, so I wasn't surprised when the Surgeon came bursting in grinning. He said it looked fantastic and "no way am I installing a chest tube!"
They will continue to treat medically with Lasix.
Better J Tube on the Way
Thomas's J Tube leaks at the site because it is a longer tube that fit his belly when it was full of edema. Now that he is a thinner fellow, there is extra space at the site, causing leaking, which really bothers Thomas's sensibilities. Surgery decided to schedule having a shorter J Tube installed on Monday. Thomas is really excited about this and claps his hands every time he announces his "good news!" to someone coming to visit him. The procedure will be done bedside and should involve "no ouchies."
Needing Less Access
The Heme-Onc team decided that we haven't been using Thomas's PICC line for a whole week anyway, so it was well time to get rid of a risk of infection and blood clots. They removed the dangling PICC line from his right arm, leaving only his port for access. (Whether this turned out to be good or not is now in question since Tom began bleeding tonight!)
The Steroid Roller Coaster
Thomas remains on stress dosing of steroids so for the third day in the row, he is crying approximately every five minutes. So many times today I made a mental note that I wanted to share this and that latest reason he was bursting into tears because they were so endearing.
He woke at 5:30 for the day and asked me to read to him from his Smithsonian Institute book about giant squids. When we got to the part about how orange roughy are being fished, leaving the giant squid without a major food source, he burst into wailing, "There won't be any more orange roughy? What are we going to do! I just love the squids so much!"
He weeps over the wrong color shirt, if there are wrinkles in his blanket, at the mere mention of his dad or siblings at home, and most definitely every time he can't have his way. He tells me that I have to sit no more than "six inches away" from him ALL DAY "because I just miss you too much, Mama!" (cue tears).
Then there was the time in the afternoon when I was desperately trying to write out my homeschool planning for the week and kept setting up Thomas with entertainment so I could work, but he would have none of it. I told him it was Quiet Time and we were not to talk. Finally an edge crept into my voice, to which Thomas started wailing, "I will try, Mama! I just can't stop talking. I just don't know why I can't stop talking, and I'm so sorry!" (Yes, that's when I utterly gave up trying to do any other duties and let the sword pierce my heart.)
At one point he was talking to a nurse tonight and starting weeping again, telling us cryptically that, "I just feel so bad about something I did to my brothers and sisters once!"
It's not all cute crying, though. He is also sassing back to the doctors, nurses, therapists, and Mama, which is completely unlike him. I keep explaining quietly that Thomas is on stress dosing and they all know and have assured me, "This is entirely expected behavior."
Communing with an Artist Friend
Because Thomas was experiencing such huge emotional hills and valleys, I decided to have him try watching Bob Ross. I had never yet introduced Thomas to Bob Ross and his happy little clouds. At first, Thomas was skeptical, declared that Bob Ross had too much hair, didn't want to watch the show, and only considered watching the show by inquiring, "Did he ever get a haircut?" ("No, honey, I think he kept his hair like that his whole life.")
The mesmerizing effect of Bob was strong in little Thomas . . . and really, who isn't calmed and lulled by Mr. Ross? I quietly sat watching Thomas, who began murmuring little commentary. "Oooo, red. Yes, that's good, good . . ." He was enraptured.
Finally, Thomas actually called me out from attending Rounds, so I rushed over to him, only to have him declare, "Mama! I feel like painting!"
Wheelchair Field Trip
So, I loaded him up in the wheelchair for the first time, doing the lifting myself! First only PT/OT could do it, then they gave permission to nurses to transfer him, then they gave permission to parents, but I wanted Chris to go first (last time), making today my first time. We got a slot reserved in the play room (only one kid at a time!) and did a wonderful painting project together. We sat side by side painting . . . well, I'm not supposed to say because Thomas wants to keep our matching subjects private until his is done. It was very relaxing and enjoyable.
PT met up with us in the play room and convinced Thomas (lots of sass talk) to be transferred out of his wheelchair onto a little, regular wooden chair--without any arm rests--short enough for Thomas's feet to be on the ground. Thomas built Duplos, with the therapist inconspicuously placing one block at a time just out of his reach, so he would have to stretch this way and that to retrieve the blocks.
Eating Purees
Thomas took his first afternoon nap in days--for which a Certain Mother Tired of Steroids was extremely grateful--and enjoyed eating numerous foods today now that he is cleared for dairy and purees.
- Milk, whole and 2%
- Apple juice and applesauce
- Vanilla yogurt and Lower-sugar strawberry-banana yogurt
- Cinnamon Cream of Wheat
- Strawberry-Banana Smoothie
- Chicken broth
- No Sugar Added peanut butter
- Lower-sugar Apple Cinnamon Oatmeal
What he eats is just two to four bites usually, then he stops, and I'm continually making sugar calculations. A number of the above items he ate repeatedly throughout the day, especially milk, broth, and peanut butter.
Blood
Thomas has had a JP surgical drain ending in a bulb since probably December 26 . . . unless this is one of the original abdominal drains truly from November 18, which is possible. For some weeks, it has drained minimally and only very thin, straw-colored fluid, something surgeons are happy to see. For so long it had to be drained hourly, but as of late only gets drained every 12 hours. Tonight, the nurse drained it at 6:00 and then I changed Thomas into pajamas. At 6:30, the nurse walked back into the room and saw that the drain was full of what appeared to be perhaps 75 ml of blood.
Immediately--the first words out of my mouth--I asked for Thomas to be hooked back to all the monitors and a baseline blood pressure taken. Surgery was called and made an appearance at 8:30.
The first surgeon is not overly worried at the time of this writing. It appears that a large, old blood clot (between the size of a ping pong ball and a golf ball) broke loose and that is not entirely unexpected after so many abdominal surgeries. The fluid around the blood clot so far is red-tinged, thin fluid, not frank blood. If it remains that way and then diminishes again, we will be in the clear. What my husband and I fear greatly is that the blood clot tearing away will start a vessel bleeding again: an emergency experience Thomas has had before and could set him back weeks.
A CBC was ordered immediately so we can compare his hemoglobin to that of yesterday and the twice-weekly trend. I know to watch for tachycardia and low blood pressure, so I asked the nurse to check Thomas's BP far more often than the every-4-hours schedule he is on now.
Broken Plumbing
Wouldn't you know it but God asked us to stretch our patient trust even more: Now Thomas's only point of access, his chest port, was not working. It worked all day, but the nurse went to draw the stat blood labs and it wouldn't draw back, nor would it flush (so she couldn't even flush it with heparin or TPA to get it flowing again). Multiple nurses worked on it for 30 minutes (at which point Thomas was fast asleep) before coming to me to present the problem. They can't even get those CBC labs, which are time-sensitive, without accessing the port, plus then they need to run his IV antibiotics.
They were reluctant to access a port on a sleeping five-year-old, but I said it had to be done, there was no other choice. Then I told them that Thomas does so well being accessed while awake (which involves a needle something like one-inch long being inserted into his chest) that I was going to suggest they let him keep sleeping and see what happens. I felt in my gut that he would keep sleeping. If he wakes up scared, I would take the blame (from my boy) for the bad call.
Thomas slept through being de-accessed. He slept through EMLA cream. He slept through a mask being put over his face for the sterile procedure. He slept through being cleaned with Betadine.
Then . . . falling under You Know You Life in the South When . . . the primary nurse folded her hands in prayer and prayed aloud sincerely to the Lord that Thomas would stay asleep.
Our boy fluttered his eyes casually a few times while being accessed, but never woke up. The two nurses both said they were "amazed" and they had "never!" known a child to sleep through a port access. They went on and on. The CBC labs were finally drawn at 10:15 p.m.
Thank you, Father, for that little gift to show your faithfulness!
Kind Words
Finally, the nurse said to me, "I just want you to know, you're a good mom and you're raising a sweet boy." Frankly, I don't care one whit if those are canned words this nurse uses on all her patients' mothers, I still need to hear them.
Holding Vigil
The surgeon and nurse told me that they would wake me up if there is any news. I decided just to nod my head instead of replying that I probably wasn't going to be sleeping much tonight. Signing off to pray a rosary for Thomas . . . St. Philomena, pray for us . . . Jesus, I trust in you . . .
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