Colin is settled in Memphis! We arrived at 1:30 am local time (Central). The flight was presumed uneventful as both passengers slept the whole way. The medical flight staff, who picked Colin up at NYU and stayed with him until he was deposited at St. Jude, marveled at how unresponsive New Yorkers are to ambulance sirens.
The hospital is beautiful, a real medical Disneyworld. We rolled in through the front door, as there is no emergency room here. The inpatient units are on the second floor (PICU is on the third floor); leukemia patients are on the north and solid tumors on the south.
The walls are painted with elaborate depictions of people and especially children engaged in various activities, creating a maze of full-height murals following a theme, in our case boats. The pictures include children with no hair running or in wheelchairs, playing with other children.
This is a children’s oncology hospital on steroids, though to be fair, it does not have the look and feel of a hospital. Every detail is designed to provide children with a medically safe, pleasant environment. There are strict rules regarding handwashing for everybody in the hospital. Visiting children under 12 must get checked out by a nurse for infectious disease before proceeding.
The rooms feature filtered air and bedside instruments for personal use, including an otoscope and thermometer. The bathroom is, except for handwashing, for patient use only (not parents). Because Colin isn’t using the bathroom, we are in his case allowed to use it.
Each room has a parent room that has a window that looks onto the patient’s room and an intercom. The parent room has its own bathroom (no shower) and pullout bed. There is also a pullout bed and a recliner in the patient room. Both have individual climate control.
There is no fighting to find linens here; parents are not allowed to retrieve their own supplies in order to minimize transmission of disease. Parents partipate in the charting of input and output and are encouraged to get involved in care, such as G-tube maintenance. All medications are scanned to make sure that the patient, medication and dose are as ordered.
Food is not delivered to the room three times a day on a regular schedule. Instead, patients order items through room service as desired. There is also a nutrition room stocked with typical kid food (mac and cheese, hot dogs, etc.). Parents can also use the fridge to store personal food items. The staff said that the hospital goes out of its way to provide whatever food the children like and will go to great lengths to procure special items from outside of the hospital. For the parents, St. Jude provides a meal card that is good for the cafeteria (while Colin is inpatient); once he leaves the hospital, we can get a card for Krogers grocery store instead.
Respiratory therapy showed up promptly at 8 am for chest PT and suctioning. Colin is on a 4-hour schedule, so they come regularly throughout the day and as needed at night so as not to disturb his sleep. They have a pneumatic vibrator that shakes things up. During the day, Colin enjoyed the vibrations, though he found it less pleasant when he was very sleepy.
Of all things, we miss the Little Sucker suction catheters that we had used in New York. Colin doesn’t like the Yankauer catheters provided here and we were not fully satisfied with the modified French/silicone catheter (two devices cut apart and put together) that Mom fashioned. Everybody walking in the room asked where we got the unusual device, though.
We met Dr. Gajjar today and discussed Colin’s schedule for next week. To our surprise, he mentioned that Colin really needs a trach tube. Given his overall improvement with managing secretions in the past month, this suggestion came from out of the blue. However, he is concerned that Colin’s risk of aspiration pneumonia increases as Colin becomes neutropenic and both becomes less resistant to illness and too tired to effectively protect his airway.
Colin will get an ENT consultation on Monday as well as anesthesiology (for the Tuesday MRI). However, the plan is to get the trach installed this coming week, assuming it is necessary. Obviously, this is something we had hoped Colin could avoid, but the bigger picture is his health during chemo and his constitutional strength.
At this point, it is easy to go along with recommendations that relate to the contraction of infections along with all of those complications. Of course, this also creates further delays regarding the start of chemo. The methotrexate will start once Colin has healed adequately from the trach.
We have found the staff here to be wonderful and kind. The environment is relaxed but serious; protocols must be adhered to. There is little flexibility for nursing discretion here.
One difference between St. Jude and a standard hospital setting is the overall relative calm. There is no trauma, no emergency room. The sick kids here are mostly sick with the same set of diseaess and their needs are well understood by the staff.
Speaking of staff, the NYU nurses pranked St. Jude! They included an item in the report that the fecal transplant ordered by Infectious Disease was put off due to the transfer. Therefore, the St. Jude nurses would have to prepare it. We wish we had been around on either end to hear it go down!
This environment has been good for Colin, even though he is still on isolation in his room. He can see out the window through trees to the highway. The view isn’t as stunning as it had been in New York, but it is fairly serene.
One strange thing that did follow us was construction! Evidently, the other half of this unit is getting a makeover that was expected to be quite noisy today. However, whatever construction we were warned of either failed to materialize or has been delayed.
We look forward to additional reports but are anxious to get some shut-eye. Colin told us that he likes this new hospital. Everybody is extremely kind to him and reassures both of us that he will get the best treatment possible.