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December 20, 2020, written by Mama
Today I got to snuggle my sweet boy in bed! We may not hold him until he is off continuous dialysis, but we may lay in bed with him!
Sunday was a day of rest for our sweet boy. Coming off the ventilator is a big event and nobody wants to make too many changes at once for delicate Thomas. He has remained sedated enough that he is asleep. He is a bit responsive, though, such as clamping his mouth shut when the nurse tries to brush his teeth and resisting body care with his legs. The nurses smile because even those are purposeful movements, which is a good thing!
It feels as if we have had to be reactive to Thomas's many emergencies for weeks, but now we can start to be proactive. We don't want to make so many plans that God laughs, but we can come up with ideas and hopes.
Bleeding
Thomas began having a little bleeding from his abdominal incision around midnight, right after extubation. Surgery came by in the morning and said they had been watching his incision for a few days and it appeared a hematoma had developed beneath it. The surgeon removed three staples from one section and three staples from another, which is allowing the old blood of the dissolving hematoma to drain out. All seems to be under control.
That said, today was a three transfusion shift when we've been starting to have just single-transfusion shifts. Thomas is up to having had 74 transfusions in 33 days.
Dialysis
We will try moving Thomas from continuous dialysis to intermittent. Probably on Monday, he will be getting a new PermaCath in a slightly larger size to help with some pressure problems we've been plagued with since the beginning. This should not be such an invasive procedure because there is already access, so Interventional Radiology will be simply sliding in one wire and sliding out the old one.
It will be a delicate and complex maneuver to switch Thomas to intermittent dialysis because his body is very reactive to change. However, once he is more awake, continuous dialysis won't be possible because one has to lie still. Also, there are some benefits to dialysis being intermittent, such as giving his kidneys more of a chance to start to wake up because a machine is not constantly doing the work.
Speaking of kidney function, a few days ago, Thomas began producing more than zero urine per hour. He is distinctly producing 5-14 mL per hour while on continuous dialysis. His goal is 19 mL per hour! Big strides. When he comes off continuous dialysis, his urine output should increase even more.
Sleeping and Waking
We are told that Thomas will definitely experience ICU psychosis/delirium because he has had no meaningful sleep for weeks. This drug sedation is not allowing actual healthy brain sleep. We've surely all had very poor or no sleep for a day or two, or been the mother of a newborn getting such fractured sleep for weeks: you know how you start to go crazy? One could even become hallucinatory? Well, this little guy basically has not slept for a month.
Thomas is already receiving Thorazine for delirium and will soon be on Trazodone for the same plus Melatonin at bedtime. We are beginning cluster care so that he receives body care every three hours instead of two, allowing for more real rest. We are also beginning sleep hygiene: lights on bright in the morning and all day, dim the lights in the evening with no screen time for several hours before bed, do a real bedtime routine, lights dark and leave him alone overnight. If he wakes in the middle of the night, the goal will be to tend to his need, but not to socialize or anything. The doctor told me he will have absolutely no routine at first and will be like a baby.
Nutrition
Right now, he is receiving only 4 mL per hour of formula through his J Tube. Goal for his size is about 20-25 mL per hour. However, he will be increased much more slowly than typical kids because of his gastrointestinal reconstruction. We are told he will be increased by 5 mL per hour only every 12 hours or so, so it would take days to reach goal feeding. Meanwhile, they watch for signs that his GI tract cannot handle the speed yet. He may not be able to digest carbohydrates yet and experience dumping syndrome. He may need to vomit, yet because of his reconstruction, he will not be able to vomit (for the rest of his life per his surgeon), so watching for that sign will require a more eagle eye from his care team.
On a related note, Thomas should keep his NG tube in until he is receiving full feeds via his J Tube because the NG tube allows us a view if there is trouble. It allows us to suction if formula is "backing up."
We do not know what the process will be for him trying to eat things orally, except that it will be very long and careful. His surgeon mentioned in passing that he would have to have a dye test before he could even have a trickle of anything by mouth in order to make sure where the esophagus was sewn to the intestine has not constricted tight (which would require stretching out). The process is going to be protracted and I'm being trained how to feed him via his J Tube at home.
In good news, Thomas's bowels "woke up" today after 15 days, so that was cause for celebration.
Withdrawal Process
The team's goal is to go very slowly with Thomas. As he has so many body systems that still need healing, we are going absolutely nowhere. Therefore, there is no rush to try to get through withdrawals, as if that would let us go home.
We have hope that perhaps these withdrawals might actually go better because he has already been on Methadone and Ativan for so long. Once Thomas is up to full feeding rate, then he would be able to start receiving Clonidine (which is used to wean off Precedex).
As of Sunday morning, Thomas's little body was already tremoring, but small, not big, and the team is watching carefully.
Physical Therapy
This is not even being talked about yet. Thomas does not have to lie flat on his back anymore, but even having the bed at a higher angle sitting upright than it is now will be a big workout for him. The physical therapist or us parents rubbing his feet and hands, gently moving his joints, will be his kind of next step.
Santa and his elves came by to visit Thomas during this week before Christmas. This photo of "COVID Christmas" is going to be iconic one day.
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| We enjoyed eating the beautiful cheesecake John (14) made. |
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