Now for a long and eventful update. Briefly, Colin enjoyed his first trip “home,” which happened during the Target House 10th Anniversary. Because he wasn’t really stabilized on several fronts, he went back to St. Jude. This happened while Mom was away for work, and not long after she returned, Colin was discharged again with some changes in the home equipment and now a private duty nurse for the evenings.
The home nursing was an utter disaster, and suffice it (for the moment) to say that we can no longer sleep at night. It was the near-worst case scenario of a sequence of concerns and questions that is yet another dodged bullet for Colin, this one much closer and more imminent than any he has previously experienced. Fortunately, Colin is back at St. Jude for chemotherapy, so we don’t have to face the prospect of going outpatient again quite yet.
This post is somewhat of a long-term project, so if you are only interested in the drama, just skip head to Part II. The bits in-between provide a lot of clarity about our experience and how we are digesting it.
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After four precious nights at home, Colin again returned to become an inpatient at St. Jude. This wasn’t a defeat but a recognition of reality. Each day that he was out of the hospital, we returned for one reason or another under the looming question of whether we could reasonably keep him at home.
The oxygen dependence, which sprung up only in the days before discharge, has gotten more intense rather than resolving, as hoped. We still have not figured out the answer to his secretions and the best balance of medications. He seems to be suffering from pain intense enough that he received morphine (in oncology, this is not an especially serious drug) and has steadily been on codeine since.
One of the difficulties in all of this is that Colin himself is incapable of telling us what he needs. We’ve put together a communication board for him. On one side, there are four things he likes to do (read books, watch TV, play with toys, go outside). On the other, there are four things he needs done for him (change diapers, pain medication, suction, and sleep).
The board is a work in progress, and he almost invariably points at the box of diapers even when he is clean and dry. And the first time he saw it, he pointed at the familiar looking pain medication (Tylenol with a medicine cup) and pointed at his mouth, so we weren’t sure if he wanted pain medication or simply wanted to ingest something by mouth. Although he does not enjoy suctioning and will swat a cathetered hand away, he sometimes selects it from the board or points to a suction catheter tray.
Discharge involved the abrupt acquisition of new equipment: a tremendously noisy, smelly (seriously, who made the habit of smoking around an oxygen machine?), bulky oxygen machine; pulse-oximeter; oxygen tanks in a rolling holster that accompany Colin on all ventures out of the apartment. The tanks don’t last very long, so we end up scurrying between oxygen access points in the hospital and the apartment.
While this may not sound especially onerous, there is already a humidifier in the room to humidify the oxygenated air that he breathes at night and an air compressor for when he does not need the extra oh-two. We have a compact and well designed feeding pump that comes with a tiny backpack that Colin happens to think is very cool.
There is an IV pole in the bedroom with the humidifier mounted on it. We have added the bracket for the feeding pump, where it rests at night with the bag of “liquid nutrition” hanging above. The pulse-oximeter does not have a bracket, but it has a handle that fits over one of the loops of the IV pole.
Colin has a portable suction machine that travels with him at all times. It is relatively weak, with the highest setting about half of the vacuum pressure we were using at the hospital. It also has very touchy tubing that often becomes kinked or disconnected, rendering it effectively inoperable much of the time.
There is no particular place to mount the asthenic suction machine on Colin’s wheelchair, but we have rigged up a method using two bent spoons. The emergency trach bag (ambubag, two replacement trachs, suction catheters, sterile saline, sterile water, sterile gloves, trach ties, humidi-vents) usually hangs on one of the arms of the chair but can also hang on a hook on the rolling oxygen holster. Now that Colin receives continuous feeds rather than bolus feeds, we also hang the backpack on one side.
Moving Colin around within the hospital proper has required the emergency trach kit and portable suction for some time, a fact that we have adapted to, but all of this apparatus adds to the equipment menagerie and complexities of movement. The fact is that transporting Colin is nothing like a normal two-year-old, or even a paralyzed two-year-old, getting in and out of a vehicle.
Between the oxygen and feeds, there are always two sets of tubing tethering him to external support devices. At home, we disconnected the feeds in order to bathe him and frankly took him off oxygen for that short time for the sake of simplicity. Picking up his naked body with fewer appliances attached (his port is still accessed, and the Medipore dressing that saves his skin also means that we can’t get that wet) was a rare pleasure.
That said, giving Colin a bath is a bit of a production, and because he sits in a plastic bath seat designed for that purpose, he is less comfortable than he would be getting a bath in a hospital bed. This alone forestalled bathing one evening when he was too uncomfortable to tolerate it and screwed up his face in pain.
On Thursday, Colin vomited all day, with much of it getting down the trach and giving us a lot to suction. This concerned us in part because of the Nissen fundoplication; either he was vomiting through it or it had come undone. At any rate, we couldn’t risk stomach acid getting into his lungs, so this resulted in lots of suctioning.
That evening, the G-tube popped out, a fact we reported in an earlier post; in the meantime, we got training on replacing the G-tube so we can fix the problem ourselves (with a new tube, not the old one). We ended up doing this about a week later, and it was not as weird as it sounded.
Because of Colin’s miserable time much of Thursday, he only marginally enjoyed the Target House festivities, which included an X-Game style exhibition in which the crowd was exhorted to more loudly appreciate the efforts of the performers. (Please more vigorously show them how grateful you are that they are here to celebrate your personal courage.)
The theme was “Fiestaval” and we have the pictures to prove it, if you look through the photo album. Colin seemed especially well suited for the fake moustache. Aidan complained that the prosthetic facial hair concealed his smile. Dad just likes hats.
Friday was better for the family, since it was closer to home and Colin was feeling better. We had oxygen tank problems but a resident from the independent living center next door, Chuck, loaned him his spare regulator. We later ran into him and told him that it enabled Colin to have a special encounter with Amy Grant.
We have mentioned the Amy Grant room, which was occupied on Friday by the actual Amy Grant. Though not especially fans of her music, we ended up there when she was signing autographs and took the opportunity to have her meet Colin. We showed her a hazy video of Colin playing the guitar, which she admired for his style and showmanship.
She pulled out one of the new acoustic guitars and made up a song for him, “Colin, the Blues Man of Memphis.” It was very sweet and cute, and she even threw in a line about Aidan, who was jumping around being entirely Aidan. Although we have been somewhat jaded about the involvement of celebrities in the support of St. Jude patients, this is always with mixed feelings at best.
Of course, we appreciate the generosity and thoughtfulness that goes behind the (evidently) significant donations of materials and, usually, personal memorabilia. There is little that the typical person can do for children with cancer, and these people feel that same impotence, but for the money and celebrity that allow them these gifts.
And though we will freely admit that we have never been fans of Amy Grant’s music, we are now devoted fans of Amy Grant. She is a lovely and genuine person who wanted to look at Colin like the little boy that he is. One of the greatest compliments I can give Amy is that she reminded us of Martha, the music therapist from NYU. Like Martha, Amy connected to Colin through music, with Colin weakly shaking a cheap but colorful maraca and enjoying her focus on him as an individual.
There was no artifice in Amy’s song and no publicist anxious to capture a photographic moment or record their touching exchange. It was just about Amy, a nice lady with a pretty voice and a guitar, and Colin, a little boy who loves music and is frustrated by his inability to do what he once could.
Amy looked at me and said, “He is a well loved child.” I looked at Aidan and said, “They both are.” She promptly sat with him at the piano and attentively watched him spazz out like the energetic five-year-old that he is. And she got a big hug and tears that are rarely forthcoming because she was looking through a mother’s eyes. “I love my babies, too,” she said.
Cousin Heidi came into town late on Saturday and was able to take care of Aidan while Dad and Colin went into St. Jude on Sunday. Managing Colin’s care became precarious enough for two people, much less one. With minimal experience in maintaining a trach and concerns about sub-par equipment at home (using the supplied crib for a 15-plus kilo child who can’t support himself is a backbreaking exercise), we needed closer medical monitoring of Colin’s condition and a review of our home situation.
This ultimately resulted in the arrival of a hospital bed replacing one of the twin beds in Aidan’s room and private duty nursing, which intended to give us peace of mind in order to sleep at night. We provided a short list of tasks, such as preparing medications for the following day, but mostly the job is to keep an eye on Colin, suction him as necessary, and make sure he is okay.
Part II
On Thursday night, we went to bed relatively early but were awoken by knocking at the bedroom door and the nurse exclaiming in a panic, “Colin’s not breathing.” I jumped out of bed and ran into the bedroom. He was blue and unresponsive, though he did sputter once or twice in vain trying to breathe. Although we have an ambubag available for getting air into his lungs, the situation was urgent and I blew into his trach with no effect.
The exact sequence of events is not completely clear in my memory, but I have to painfully note my lapses. We set him up for CPR and initiated it there was some thought to suction though I have no recollection of whether I actually did it. I finally removed the trach, which I should have done earlier.
My thought was to have the new trach at the ready, but airway collapse is not really Colin’s issue. His reason for having the trach is not to maintain patency of the airway but to protect against aspiration from vocal cord paralysis.
Thus, I didn’t even put in the new trach until after the old one was out and we established an airway through the open stoma. I again didn’t bother with the ambubag but breathed directly into the stoma. After a few breaths, he started breathing on his own again. Once we were certain that he was breathing well, I installed the new trach.
All this time, Dad called 911, grabbed Aidan, who didn’t really see anything, and ran downstairs to make sure security held the gates open for the ambulance and fire truck. By the time Colin was out front, tucked into the gurney and waiting to be transported by ambulance to Le Bonheur Children’s Hospital, he was pointing happily at the fire truck.
Though Colin did and does seem none the worse for wear, there is an understandable residual horror from seeing your own child hanging at the precipice at life and being responsible for pulling him back over the edge. The unforgettable blueness, sanitized via Latin to the medical term “cyanotic,” haunts me, as does his limpness and the lifeless glassiness of his eyes, open and unseeing. Moving him into the flat of the bed was like handling a CPR dummy doll.
I remember pressing my fingers gently on Colin’s chest when we received CPR training, discussing the ideal placement and orientation of hands and fingers and only casually noting the eeriness of doing so. There is the inevitable parallel to the little girl at NYU who did not fare as well as he did (for anybody who has not read the archives or does not recall, see the earlier post “Kiss Your Baby Now” from August 6, 2009)
After spending time hearing parents’ stories in the PICU, we have noted the importance of CPR training in saving a child’s life but never thought we would end up using it ourselves. In point of fact, it wasn’t the CPR but simply the principle of ABC: Airway, Breathing, Circulation. It is hideously basic but it also works. Once the airway was clear, the breathing was easy enough to get going, along with circulation.
Looking back, there are things I would quickly correct and I review how better to handle the situation in the future. Did I waste precious seconds doing one thing or another; how long did I spend trying to remember the next thing to do? I will live through many mental fire drills and will hopefully never have to play them out for real again.
A question to ask in retrospect is why the nurse herself did not establish the airway. Mucous plugs are an all-too-common phenomenon of trachs that are easily dealt with through an immediate trach change. The cyanosis and need for resuscitation are horrifying evidence of time spent doing something other than establishing that precious airway. Why did she come and fetch us rather than get Colin breathing again?
Anybody truly familiar with trachs would have jumped to that immediately, especially somebody with formal training in direct patient care. We were led to believe that the nurse sent to our house had experience with children and with trachs, but based on the evidence, she definitely failed on the latter count.
She was not aware of the location of Colin’s emergency trach supplies, which I had hanging on the bed. She reported to Ian that Colin did not have a pulse, a fact that surprised me since that is irrelevant. Again, time wasted.
Whatever lapses led to Colin’s near-death experience, we will have a difficult time sleeping at night. Dr. Thompson confirmed that the standard home-based equipment is inadequate in providing moisture, but the remedies (room humidifier; drops of sterile saline down the trach) for that violate St. Jude policy and our instructions for maintaining the trach. We have since suggested that the hospital revisit its trach training and make appropriate adjustments for home care.
People call me a hero, but I want no part of heroism. I made mistakes that could have cost him his life or caused him grave injury. I never want to be put in the position to resuscitate either of my children; nor do I have much faith that others will be attentive or competent enough to do so. While managing Colin’s care has been a welcome burden, this aspect of medicine is unbearable.
Colin is the blue(s) man of Memphis, and let us hope that he only has as many encores as Elvis. Play on, blues man.