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December 2, 2020, written by Mama
Thomas has gone 36 hours without any discernable GI bleeding! The doctors want to see him go at least 48 hours without bleeding before they extubate him. His lungs are strong on the breathing trials.
We also have to coordinate possibly taking Thomas off of continuous dialysis, testing again if his kidneys will function at all, and that might involve him moving to intermittent dialysis. However, there is concern about whether his body can handle intermittent dialysis since it could cause hypotension, and instability of blood pressure would not be good for his kidneys.
I inquired about coordinating this carefully because I don't want him going through withdrawals again while also doing experiments with dialysis, possibly resulting in blood pressure gymnastics, as he's had enough of those! The team is working on a plan.
Meanwhile Thomas is sleeping very soundly. We had a new nurse today who went into the 'special stash' of personalized sweet things in order to give Thomas special dinosaur socks and a quilt. I can't tell you how this warms a parent's heart to see her sick child humanized. This is the same dear lady who put barrettes in the hair of my friend P's daughter's hair while she was in PICU two years ago. These nurses are angels.
Thomas has spent a few quiet wakeful stretches (not agitated) today, during which I asked him, "Do you want to hold Sloth?" He nodded yes, so I placed Sloth under his hand, since his hands are now so weak they cannot grip at all. Later the nurse put on Christmas music on YouTube for him to watch and he eagerly nodded that he wanted to watch the fireplace crackling.
Bits of Straw from my Bird Nest Brain:
1. It took me only 13 days in ICU drinking unappealing powdered creamer in my coffee to remember that I could ask my husband to bring me a pint of real half and half.
2. I learned that if one excludes the long stays, which are apparently rare, the typical PICU stay here is four to five days.
3. There are 46 nurses employed in PICU (excluding the cardiac side of PICU, which has its own nurses). We have been here for 30 shifts of having two nurses per shift, so I bet I've met maybe as many as 35 nurses who work here. Wowzers! I try really hard to remember their names and details about their children and families.
4. I've always thought of surgeons as cowboys who ride in, do dramatic work, and leave. To the contrary, Thomas's surgical team has visited him at least once daily (and multiple times daily during bad times) ever since his surgery 15 days ago. The surgeons, not nurses, are even the ones who change his bandage daily so they can take responsibility for his incision healing. Thomas is considered a "surgical case" and his team has not abandoned him. The head surgeon--the kind of big doctor with 30 years' experience who no longer has to walk hospital hallways--visits Thomas regularly and checks on his chart every single day from home, including over Thanksgiving "because I worry about him." These surgeons are a bit of mother hens as well.
5. The anesthesiologist from Thomas's original surgery stopped by today just to say hello. He'd been keeping up with Thomas's case via the other doctors and he told me that he thinks about Thomas every day. I really think that's sincere.
6. In fact, numerous of his past nurses stop by to check on him, including today the protective nurse who was here during his dramatic bleed. One of the nurses today said to another one, "Thomas is the kind of boy who takes about six whole minutes to wiggle his way into your heart."
On the Homefront
Nine-year-old Margaret injured her toe badly when a wooden stool fell upon it. Her daddy took her to Urgent Care but they redirected her the Emergency Department in the very hospital where Thomas is! The ED had to removal her toenail and add some stitches, then place her toenail back into the slot (!) to hold a place for the new toenail to grow in. It being a small world and all, the resident who helped Margaret down in the Emergency Department had just finished his rotation up in PICU and knew of Thomas! (Thank you to Neighbor J--- who had to pinch hit babysit for our children while Chris took Margaret to the ED!)
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