Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

September 9, 2009

Putting the Fundo to the Test

After Colin’s sudden swelling on Sunday, Monday started off relatively placid. However, he remained generally puffy and his secretions continued non-stop. This was no great surprise given the tremendous amount of fluids he was receiving, but it was also exacerbated by nausea.

As the day progressed, Colin flagged. In the afternoon, he actually vomited for the first time since he had the Nissen fundoplication. At that time, Dr. Nadler had told us that he leans toward a looser fit rather than a tighter one so as to avoid complications associated with excessive tightness. Thus, he said that Colin would be able to vomit through the fundoplication. However, many other people have stated that it is impossible to vomit through a fundoplication.

Until now, we haven’t been sure, since the absence of vomiting doesn’t prove that the fundo prevents it entirely. Now, the question is whether the fundoplication is still patent. Given Dr. Nadler’s statement, it’s impossible to say that it has unwound. On Tuesday, Colin refluxed (how can we tell the difference between vomiting and refluxing?), raising additional questions about the fundo.

In either case, the problem is that Colin aspirates whatever comes up from his stomach. This makes frequent suctioning of the trach absolutely necessary.

On Tuesday, he also got a visit from Dr. Thompson, the ENT who put in the trach. He said that we can inflate the trach cuff more or less depending on Colin’s secretions. This is something we can apply with our own judgement according to a given range (up to 1 1/4 mL).

We also discovered from the respiratory therapist that the trach cuffs do not come out of the box completely elastic. Therefore, it is necessary to inflate the cuff fully a few times before putting it in — the effect was evident when we started doing this. We got to do the first trach change ourselves today and it went very smoothly.

We realized, however, that when the ENT resident inserted the last trach, he did not inflate the cuff before putting it in, so when we thought it was inflated, it wasn’t doing anything at all. We tested this by putting 1 mL of air in the cuff after it was removed. Nothing — the balloon didn’t move at all.

Here, all trach care is performed under sterile conditions. The trachs themselves, once cleaned, can be taken to St. Jude for sterilization. This is a great convenience for families here but goes along with the general philosophy, which is to facilitate the required care for families.

Colin’s chunky chin (he has an excuse that the rest of us don’t, steroids!) gets in the way of the trach, so Dr. Thompson also recommended a different type of trach that has a longer neck that will keep the end more out of the way.

As for Colin’s bloated features, his face now looks much more normal. The expressions are evident on his “good” side, but the other side looks less lopsided and, when he’s sleeping, it’s impossible to tell that half of his face doesn’t work right.

In general, Colin’s been quite sleepy, perhaps in part because of chemo and in part because of the steady regimen of anti-emetic drugs he is taking. He was happy to do PT today but virtually slept through his time with Miss Kerry. When we thought he was too tired to go on, we asked him to raise his hand if he wanted to keep playing and he mustered up the strength to respond.

Despite feeling fairly yucky for most of the day, we managed to get Colin outside for a short stint on Monday at his request. We essentially went outside and turned around (again, at his request). He didn’t even want to visit the fish tanks. On Tuesday, however, he didn’t ask to go out. Even if we only go outside for a few minutes, it’s important for us to honor his requests when possible and reinforce the idea that he gets to leave the hospital eventually.

It is virtually impossible to imagine a time when Colin is not hospitalized, although we are very close to discharge. His planned discharge for Wednesday may be delayed a bit because we want to make sure that they have figured out the right regimen of medications for him. In particular, the diarrhea is not under control (they took the anti-diarrheal out of the cycle and he had a big soupy diaper in the early evening). Also, he is still suffering from nausea and requires a lot of suctioning. We appreciate the support and advice of the nursing and respiratory therapy staff for this.

Learning how to care for Colin is partly an exercise in learning how to balance his various physical states. When he goes through chemo, he will be overloaded with fluid and have some problems resulting for that (especially because he is not physically active). This also tends to increase his secretions, but so does nausea. Increased secretions also force us to suction his mouth and trach more. Actual vomiting forces us to suction even more aggressively. We are at the same time reminded that there is a risk that over-suctioning will cause Colin to secrete even more!

That is just the top half; the bottom requires a separate and well known regimen of observation and care. One thing that hasn’t changed moving to St. Jude is that Colin’s bottom is a hot topic of conversation around here. A formed stool would deserve a bulletin on the PA system!

Outside of the chemo and very different treatment environment at St. Jude, Memphis is completely from the other environments we have been living in. There is a funky part of town where we had BBQ for dinner. The food was tasty if not healthful, and we have a mission to try out all of the well regarded BBQ joints in town. If nothing else, this obviates us from the need to learn how to prepare BBQ but will certainly make us snobs of some sort.

Unfortunately, something else that is currently “popular” in Memphis is the H1N1 virus. St. Jude has stepped up the monitoring and protocols here. Now, any patient who has respiratory symptoms automatically goes into isolation without being affirmatively diagnosed with H1N1.

We are expecting that the hospital will recommend vaccination of all of its patients and families for both H1N1 and the standard flu. The official recommendation hasn’t gone out, but we have whiffed rumors in the air about it.

The normally clean lobby now carries a stronger antiseptic smell and there are hand sanitizer dispensers on the counter there. The hospital has been giving away pocket-sized sanitizers.

Measures to protect the patients here from infection spread, though less stringently, to the public living areas. At Target House, there are now signs up about visitors with illnesses. Neutropenic children are always discouraged from congregating in public areas, though this does not stop them from doing so, nor does it stop them from playing in the newly opened playground. If a child has the energy to jump around on the shiny playset or zip in circles on a bike, one can’t admonish him for doing so or his parents for allowing it.

There are parents in the same trial as Colin’s who sigh, complaining that they spend all their energy chasing their children around. “It’s a good problem to have,” we tell them, but it’s not clear that they understand this.

To see Colin’s body sagging, head lolling to the side, it is hard to imagine him getting far away from us. But even in his currently weakened state, we see signs that parts of him are improving. He is turning his body independently and exploring the mobility of his fingers. His hands yearn for objects, and it is impossible for him to even sleep without holding something in his left hand.

When the fatigue of chemo fades, we suspect that he will take huge strides in his therapies. The biggest challenge (we hope) is going to be figuring out when he can use the Passy-Muir valve to try to speak.

Aidan continues to enjoy school, though he can never seem to recall what he did during the day. Some things never change! We saw a small gray cat (probably a juvenile or young adult) at the BBQ place. He was more excited to see the cat than eat dinner but had to wait until he was done to track her down. All throughout his meal, he asked where the cat had gone and whether it had crossed the street. He provided a virtually running commentary describing that it had stayed in the parking lot but not left the property. Finally, he said that he missed Bella and wanted to see her right now. We had to explain that cats aren’t allowed at Target House or the hospital because of germs, but it is yet another element of Aidan’s life that he has lost in our quest to seek out treatment for Colin.

There is a constant balance to this process that, if not recognized, gets lost in the moment but accumulates in aggregate. Driving relentlessly and mindlessly to a particular goal is fruitless because we cannot guarantee the results. We can only determine a course that make sense in the moment while still aiming at a goal that, for Colin, is a cure. There are moments when families are forced to make different decisions, and they must be difficult ones.

The mission of St. Jude has transformed over the years from essentially providing compassionate palliative care for terminally ill children to giving them hope and continuing to search for more and better solutions to the problems presented by cancer. But even the more curable forms of cancer cannot always be cured.

Patients return as necessary, often into adulthood. I asked one of the nurses who made a girlish bracelet that had the stamp of a home crafted piece, full of shiny pink beads and hearts. “A patient,” she replied. “Actually, the wife of a patient.”

There are certainly patients with children of their own. Some patients become pregnant while they are ill or come for treatment when they are already pregnant. St. Jude encounters a variety of unexpected situations but handles them to the best of its ability. We haven’t asked how they give chemo to a pregnant teenager or whether they encourage safe sex among teens who are here for treatment. At least we don’t have to worry about that with Colin… not yet.

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