We have definitely deferred bringing Colin “home” to the Target House until we (read: the medical team) have resolved some of the lingering issues whose causes are not 100% certain. For one thing, we are suctioning his trach like crazy. The doctors need to resolve whether we think he is secreting more or managing his secretions more poorly.
The vincristine can have, as a side effect, paralysis of the vocal cords. With one vocal cord out of commission already (hopefully not permanently), even mild effects would have a big effect on Colin. This is not a common phenomenon but something we need to consider. Typically, it is easy enough to tell based on whether the child is hoarse, but Colin isn’t talking at all.
On Thursday, an ENT will scope Colin’s throat to assess vocal cord movement. A problem would explain why he seems to be struggling more with secretions now. In addition, it seems like the cuff in the trach isn’t working very well, but we are reluctant to make any adjustments to the pressure in the cuff without further direction from ENT (the trachea itself can be easily damaged).
We have felt that Colin clinically shows signs of nausea by salivating more, and so nausea could make matters worse, though the expectation is that he should be out of the woods with nausea at this point. There could be other metabolic reasons; if he is actually refluxing, that could cause more secretions.
The doctors would like to give Colin Reglan, which would help increase gastric motility (and reduce nausea, if he is still experiencing it) but could also have some ramifications with regard to the diarrhea. On the diarrhea front, he finished the latest antibiotic today, so we are hoping that this will have a positive effect. We’re still not entirely sure what the cause of the diarrhea is and, therefore, what action(s) will resolve it.
There is always a bit of a tug here and a pull there in order to figure out the right balance. It’s like trying to take a shower at a comfortable temperature where you have to adjust 15 different knobs, all of them with dubious relationship to a specific temperature and some of them dynamically changing or spontaneously turning on and off.
What we are hoping for is some semblance of stability with medications and a reasonable sense of which changes have what effect. Right now, we are still guessing what is going to work and the doctors are admittedly experimenting with one thing and another.
On the positive front, Colin’s diaper rash is definitely improved and never got bad. The wound care nurse did think we were a little nuts about this (especially the use of the otoscope for a careful examination… but really, it’s an awesome tool for butt inspections!), but we’ve been there and don’t want to have Colin go through that again. Honestly, the nurses do understand and certainly none of them want to see him cope with active bleeding.
Much of Colin’s care is prophylactic, and they have great tools here to reduce skin problems, which are rampant during chemo. Skin cells tend to fall in the category of rapidly dividing cells that are targeted by chemo drugs.
Colin was very happy to have PT and OT today, though he wasn’t as perky as he has been. However, his movement is quite good. After all of the activity (and probably with a little help from Benadryl), he conked out. As we pass out of the presumed nausea zone, we are taking down the Benadryl and have not administered Ativan today.
Again, this evening, Colin wanted to go outside and got a chance to look at a big fire engine (a parent on the floor was experiencing chest pains, so he was transported out of the hospital; the fire department arrived first). However, he wasn’t anxious to linger and asked to return to his room soon after. At least he got a chance to go outside and feel the wind on his face, which he does nearly every day, even if only for a few minutes.
Perhaps part of our motivation to get him outside is the forced confinement in New York, which many of the staff here view as an inconceivable cruelty. The environment made it pretty much impossible, but it is hard to explain. Many here are horrified by the idea of more than one bed in a room, much less four.
That said, not many families go outside with children who are inpatient. Many of them are neutropenic, but fresh air seems to have a therapeutic effect. A lot of the children are mobile but stay on the floor. We, on the other hand, traipse around with our little lopsided wonder (and, generally, with suction equipment on hand).
There are so many ways that our former hospital experience has shaped our time here. For one thing, we know a lot more about hospital equipment and the possibilities of what might be available. For example, the Neotech Little Suckers are apparently on their way! We are petitioning for the hospital to carry them as a matter of course, since they are probably a better suction device for children going through chemo who have mouth sores. Regardless, Colin will get some due to our persistence in requesting them.
Other parents may lobby for their children to get a special food item (this has been known to happen), but Colin gets a suction catheter! And gravity feed bolus feeding bags, at long last. These can only be used while we are outpatient (there are some stringent rules regarding the use of new materials), but at least we will get them. While we’re inpatient, Colin will probably be on continuous feeds anyway to reduce nausea.
The rules at St. Jude are a thing to behold, yet there is also a pervasive willingness to do what is right for the patient. We are also making our case for the hospital to have a music therapist or some kind of music therapy program, since we found it extremely backward not to have anybody for that. Providing CDs for the patients (especially the brunch piano music one, ugh!) doesn’t quite cut it.
But we most look forward to Colin joining us at Target House. His many boxes of medical supplies await him in the meantime! We can’t wait to bring him to the Amy Grant room and show him the boxes and boxes of musical instruments there. Apparently, the room replicates an actual room in Amy Grant’s house, though presumably she doesn’t have as much Amy Grant memorabilia on her own walls (one never knows) and she probably doesn’t devote as much time to PS3 as we typically see there.
This week, especially with the ominous reminder of isolation notices sprouting on the doors around us, we will be getting flu shots for the family and will get H1N1 shots when they become available. Memphis is providing them for all schoolchildren, and with Aidan officially in a kindergarten, we presume that he will qualify. Colin will get whatever St. Jude recommends at whatever time is advisable, and we are assiduously washing our hands to ward off the very real heebie-jeebies.
The protocol is fairly straightforward but onerous: if you leave or enter the room, wash your hands. This applies to parents as well as medical staff, but families are notoriously poor at following these instructions, so they tend to be vector for transmission of germs. The real nexus of communal activity is the nutrition room, where all families go for snacks that are provided for the children, a fridge, and coffee. Everybody ends up there and one has to enter a code on push buttons to get in, so probably the most important thing to protect Colin is to wash our hands thoroughly upon return from the nutrition-plus-bonus-microbes room.