The weekend has been eventful in many ways, and Colin now hovers at the brink of the next step in his treatment, installation of the shunt and replacement mediport. Medically, he is stable yet not trouble free. The most pressing issues are terrible diaper rash from continued diarrhea and fluid/chemical imbalances.
The diaper rash is the most obvious cause of discomfort and has required constant attention. Without getting into excessively gory details, he has been “open to air” since Saturday morning, which allows the affected area to dry thoroughly and provides a full field of vision so we can attend to necessary cleansing and application of balms.
After the diarrhea first appeared, we applied petroleum jelly as a prophylactic, but eventually upgraded to A&D ointment. When the situation worsened, we added standard zinc-based diaper rash cream on top of that. However, when that proved inadequate, his nurse lovingly mixed up “triple cream,” which consists of Balmex, A&D ointment, and Mylanta. The last ingredient is intended to neutralize the acids from the diarrhea.
The gastroenterologist, Dr. Levy, visited Colin on Friday and tantalizingly held out the offer of another special formulary, should the triple cream fail. The next day, we made our case for “Levy Butt Paste” (his appellation, not ours). Although this concoction was not widely known among the nurses, some version of it does enter internet discussions on diaper rash treatments.
The new treatment consists of Mylanta, Aquaphor, and Questran. Questran is a powder that is used orally to reduce cholesterol; it serves a similar purpose in Levy Butt Paste by binding to bile. Dr. Levy also recommended setting up an oxygen blow-by directed at Colin’s nether area to help dry the skin and increase the oxygen for healing.
Colin’s diaper rash is an example of one of those medical problems that can really only be addressed through attentive nursing. The past several days have been filled with fastidious attention to the details of his squishy tushie and precisely what methods work best to maximize healing and comfort. Frankly, it’s exhausting work and somewhat unexpected to us, since all of his critical issues have resided at the other end!
The nurses here have been indispensible in properly caring for Colin, since they have so much experience dealing with this sort of thing. One thing we have learned about nursing is that there is a lot of variation in the details of how they execute their jobs. As a patient, we get to see different methods for setting up blow-bys, organizing supplies, flushing the G-tube, setting up the patient in a certain position, giving a tub bath… the list goes on. The available supplies vary according to the unit and, sometimes, the day of the week (some dwindle by the end of the weekend).
Even in rather trivial things, we have learned the value of navigating the system. For example, every day Colin needs to wear an eye patch over his good eye to prevent lazy eye. The eye patches provided initially were insanely impractical for a two-year-old, so we only used the soft gauze eye patch that ophthalmology provided. However, these patches are not very durable and soon needed to be replaced. They are not part of the standard stock on the floor, so we have been making them out of gauze cut and folded in the right shape and taped to hold together.
There are several basic issues: how to make the patch and how to secure it properly. The gauze that we have here comes in 4×4 squares and is fairly open weave but is easy to cut and fold. First, we used a pretty big piece, but it was hard to get this close enough to Colin’s eye to force his eye shut. We have transitioned to a smaller rectangle and continue to refine the design. Although we save the patch after hand tooling it, it often ends up discarded or missing (probably stuck to somebody’s pants) and have to start over.
As for securing the patch to Colin’s face, this is an ongoing battle. The silk tape that is readily available seems to be more like a waxing strip intended to facilitate the (still necessary) manscaping on Colin’s forehead and brow, so it’s not ideal to tape on his face every day. The paper tape is not available on the regular pediatric floor, so when we got some in the PICU, we made sure it came back with us and further keep an eye on it so it doesn’t get lost. The problem with the paper tape is that it’s really not as sticky, and we haven’t perfected the right angle of application and are perhaps too cognizant of conserving tape. Attempts to use smaller pieces look ridiculous and are often ineffective. This continues to be a work in progress.
So in small ways, we have an understanding of some of the frustrations and problem solving skills associated with nursing. At the same time, these are things where we can pitch in and facilitate – or even develop preferences regarding Colin’s care, which can either be a boon or an annoyance. We appreciate the camaraderie with the nurses that develops and also enjoy disseminating successful tips that we have picked up from the different nurses. Many of them have innovated non-traditional uses for equipment (bottle caps, syringes, etc.) that can be useful in patient care or, at the very least, provide an intangible pleasure to the nurse who is implementing it.
Colin’s weekend was further marred by increasing edema caused by fluid imbalances. Fluid retention has also diluted his blood, lowering his hemoglobin enough that they began discussing the need for a blood transfusion. By completely and artificially controlling every input into Colin’s body (rather than allowing his hunger and thirst to mediate), we create a situation where we can easily tip the balance to an unhealthy state.
Diuretics and other measures have evidently helped enough to avoid the transfusion, but the situation is extremely complex and requires constant monitoring. This is an area where the skills of nursing aren’t as important as their observations about his condition (i.e. relative swelling). Instead, the doctors run tests, look at his numbers, tweak one thing or another, and check to see how that is progressing.
All the same, he is still all systems go for surgery in the morning. This is a tremendous relief, as it has become clear to us that the shunt is necessary for his stabilization and improvement.
Colin’s mood has also mellowed in the days since we moved out of the PICU, and he is expresses less fear – it helps that there have been relatively few major procedures in recent days and a minimum of beeping equipment in his room. On Saturday, he cracked up at his brother’s antics and was happy about a lot of things, even though his face remains generally unexpressive. The infection and C. Diff have clearly tuckered him out, and he is by great measures less spunky than he had been. However, he is “growling” more. This sound is not always a complaint but seems more like a primitive vocalization.
Taken on its own, Colin’s condition is a shocking deterioration. It is easy to forget that he was ever able to talk or walk or even actively play. A few days ago, he was happy to sit up, but now we wouldn’t dare attempt it because of the tenderness of his derriere. However, we finally see the light at the end of the tunnel for his physical improvement.
As Colin recovers from infection and the effects of antibiotics, he will finally address the question of hydrocephalus. With his ventricles creeping up in size, we know that the effect cannot be good and it has the potential to be disastrously bad. The shunt will help take that issue off the table (more or less).
The next terrifying thing that lies around the corner is chemo. We haven’t come up with a specific plan, which makes the prospect less concrete but no less daunting. But even worse is the alternative, which would be not to attempt to eradicate the tumor or at least hold the disease at bay until radiation is more appealing. During the week, we will also perform another MRI to possibly confirm the metastasis into the spine.
Our local newspaper, the Danbury News-Times, ran a story on Colin this weekend that generated (mostly) very kind responses. Even those individuals who choose to judge us negatively as parents wish our family well, though it is distressing to find our journey coming under such scrutiny. We had initially elected to share our story to help raise awareness about childhood brain tumors (diagnosis is the first step to a cure!) and about the impact that a major illness can have on a family.
In the balance, it was the right thing to do, and we certainly appreciate the generosity of spirit that we have enjoyed following the article. Having our lives this significantly rerouted is disorienting and isolating, so it becomes important to find communion in any way that we can. We embrace and absorb the tremendous good will that has come our way. As always, thank you all.