This morning, Colin woke up with diarrhea and had several bouts before noon. Whenever he would reach toward Mom, it turns out that he just wanted to get changed. A thorough inspection with the otoscope (this is the greatest tool in the room since it allows a very well lit view of the area of operation) revealed a very small area of skin breakdown in the perineal area and some other at-risk regions.
Fortunately, we caught the problem early in the game and the flow slowed considerably during the day, allowing him to be normally active. He did PT, sitting on a balance ball, which he thought was hilarious, and spending time in the stander (a less adjustable version of the tilt table in New York).
The nurse specialist who manages skin care and much of our training recommended a new balm that includes calamine among other things. The balm is spread on very thickly and provides a protective coat. We also went open-to-air starting in the late afternoon, which is always a good strategy.
The new balm definitely works well, since fluids bead up like nobody’s business. The containers are too small and we have almost expended the first one in less than a day, but we are already big fans (Calmoseptine is the name).
Besides the diarrhea, Colin had a great day and everybody thinks he looks better and better. He put a speech therapy tool (chewie tube) in his mouth and chewed a bit. He also got a lot of amusement from a pacifier, which we tried to use to associate the filling of his belly with his mouth.
In the late morning, Colin took a stroll outside and saw the gardens with waterfall again. He also saw an armored truck and got the driver to honk the horn. He waved at the driver when asked and again later spontaneously. We are seeing a lot more movement from his hands, and he even uses the right a bit, although it is very hard for him to control his fingers.
Although we’ve been relying on hand squeezes to communicate, and Colin does have a penchant for hand holding, we now also ask him to raise his hand to say yes. When we ask something that we think he really wants, we’ll ask him to raise both hands in order to get it to happen (for instance, if you want to go outside, raise both hands).
We have been getting more comfortable taking Colin outside, and it’s easier with him clearing his trach better on his own. Also, the staff is getting used to us doing it and lets us go with no monitors now, just dragging the IV pole around. The doctors encourage this activity since he will be starting seriously depleting chemo on Saturday. As his counts go down, he will not be allowed to venture out.
Today, Colin transitioned fully to “normal” bolus feeds of one full can at a time. We discovered an interesting thing, which is that few children get bolus feeds here. Virtually none unless they have an NG-tube. When they have a G-tube installed, they also have a J-tube, which feeds directly into the small intestine. This makes bolus feeds impossible.
It also means that they are not accustomed to making supplies available to facilitate bolus feeds. We are pouring the cans into a large plastic syringe. Although this is possible, it’s needlessly laborious. It requires a person to hold the syringe and refill it until the can is expended, since the syringe holds less than a can. The alternative is to use the pump to deliver food over the course of an hour, but in our mind that defeats the purpose of a true bolus feed. Call us neo-Luddites, but we would like to go off the grid to feed him.
Also, we discovered that Colin would not have received a Nissen fundoplicostomy here, since only minor “oncology-related” procedures are performed at St. Jude. Therefore, he is one of relatively few children with a fundo. This explains why there is more reliance on vomiting as an important symptom here than we might otherwise have expected. We often remind the staff that he has never vomited since the fundoplicostomy, so there is no indication that it allows him to do so.
Tomorrow, Colin gets a very serious audiology assessment — they conduct it under sedation. The last test at NYU showed that the “good” ear is working well and was inconclusive on the right. We will definitely get some kind of answer on this. Interestingly, Colin does respond to commands when his left ear is flush against the bed.
Colin is not allowed to take in any food after 2 am because the test is at 10 am. Now that he is receiving bolus feeds, we can adjust the schedule so he doesn’t lose total nutrition for the day or get extra hungry. Arranging this was interesting, since formula is send up from the pharmacy.
When Colin got pump-based feeds, the bags arrived pre-filled from the pharmacy and were discarded at the end of the cycle, rather than being reused (the policy at St. Jude is that a single bag can be used at home for a maximum of 12 hours [in the hospital, 8] in the case of can feeds or a single use in the case of ones reconstituted from powder).
Now that Colin receives bolus feeds, they send up a can with a label on it stating the amount he is supposed to receive. Apparently, the pharmacy first asked the nutritionist how they would fill syringes with the feed if the syringes were smaller than the requested dose. This, as you can see, is evidence of the relative infrequency of bolus feeds here!
As with other pharmaceuticals, the feed is scheduled at set times. If he is NPO at a particular time, they won’t send up the can. The nutritionist was, however, able to adjust the “prescription” so that it reads “four cans a day” to be administered per the nurse or family. This gives us greater latitude in feeding Colin and getting him adjusted to a schedule that will coordinate with our family’s rhythm when we bring him home.
It will be a pleasant change to have Colin in a less clinical setting. St. Jude is probably the most didactically clinical place we have ever been. This serves as a measure of quality control, but it also can create farcical situations. For example, we need sterile suction catheters for Colin’s trach. One evening, the nurse ordered more and received, instead, Foley catheters (for urine!). This happened repeatedly until she gave the secretary our last catheter so she could read out the details on the package.
Sometimes, we receive special materials from the wound care nurse that are not generally available, and these can be difficult to replace, especially at night. Then, there can be the opposite problem; when we didn’t have enough humid-vents for Colin’s trach (also called an “artificial nose,” these cover the trach opening and preserve the humidity and heat in the air in the lungs), suddenly a box appeared with dozens of them. The ENT later joked that he had never seen so many of them in one place at one time.
For the most part, supplies are easy to get (eventually if not immediately). We have heard stories about the hospital going to great lengths to get a child a particular favored beverage or food. Unfortunately, they will have to perform no such service for Colin. He is quite upset about his inability to eat and tried to grab the syringe with his feed and drink it.
Initially, we praised him for “helping” by holding the syringe, but soon realized he was tipping it toward his mouth. There was no danger of him drinking any, but he was spitting mad when we took it away from him. Although we don’t want to frustrate him, we are happy to see that his desire for real food is alive and well.