When Max was first diagnosed with food allergies, we thought that at least one place would be well equipped to manage them – the hospital. We have found over the years, however, that being inpatient in the hospital actually requires the most vigilance.
Some background: Max, although born full term and perfectly healthy, had some bad luck early on and by age 5 had developed a fairly complicated medical history including febrile seizures, asthma and a chronic neurological condition caused by a rare complication from an ear infection. You can read more about it here: Our Journey, but the upshot is that we have lost track of how many admissions to the hospital he has had over the years.
During that time, we have stayed primarily at two major children’s hospitals, LeBonheur in Memphis and Arkansas Children’s Hospital in Little Rock. Despite in both cases having carefully documented his food allergies in the admission paperwork and in his medical history, he has been served food with his allergens in them in both places multiple times. Each time it has taken getting a patient advocate involved before anyone made any serious effort to correct the problem.
It is particularly frustrating because at both hospitals we have felt like we were re-inventing the wheel, but we know that Max can’t be the first patient they have had with multiple food allergies.
In the case of LeBonheur, we quickly discovered the system the food service used to process orders was only capable of screening out one allergen. It would tell us that certain foods were safe because they didn’t have dairy, but it would let through items which had Max’s other allergens, most notably eggs. While it may not seem like a big deal to have to double check everything, it can lead to some extra frustration in what is usually an already frustrating situation. For instance, I remember how excited Max was thinking he was going to have a Rice Krispy treat for dessert one night. It had been a long day of waiting around and of medical testing. This treat was set to be the high point of the evening. The treat arrived, luckily still in its packaging. When we double checked the label it was clearly marked as containing eggs, to which at that point he was still highly allergic. Grrr. Little guy shrugged it off, but Mama and Papa Bear were not happy that night.
After we complained the next day, food service switched his profile to screen for eggs and the next meal they sent up included a package of Cheetos. When we called to complain again, rather than apologize, they incredibly suggested that maybe Cheetos were safe. Maybe they didn’t have dairy. They do, and it says so quite clearly on the label.
The system we encountered at ACH was similar. Again they wanted Max to decide what he wanted to eat and then when we called to order they would be able to tell us what was and wasn’t safe. So what would happen is we would negotiate with Max what he thought he would want. He would finally decide on, say, a turkey sandwich. Then we would call and discover they had no safe bread for his sandwich and no safe chips. Then we would have to scramble around to figure out what he could have. That process set him up for disappointment every meal.
Eventually, with the help of the patient advocate, food service sent someone to go over the menu and mark out what was unsafe. It then became clear that whole food groups were missing from his options. While at LeBonheur, the hospital had been willing to send someone to shop for him to fill the gaps, we were told we were just out of luck at Arkansas Children’s. To add insult to injury, after we complained, they sent a dietitian who questioned us about giving him outside food, including bread from home, asking us if we were sure it was safe.
Yet it wasn’t just meal times that made managing the allergies challenging. The egg allergy also made choosing anesthesia more complicated. During many of Max’s hospital stays doctors were trying to assess Max’s intracranial pressure to determine just how high it was. The anesthesia they normally used to sedate kids for the lumbar punctures in this situation was unsafe for kids with egg allergies.
There was often a stir about what to use in what dose so that the new anesthesia wouldn’t raise his pressure and give them an inaccurate measure of what his unsedated pressure was. At one lumbar puncture (or “back poke” as Max liked to call them), I was sitting with him trying to distract him and watching and waiting for the anesthesia nurse to get things ready. I heard the nurse say that it was odd that the meds were not set out as they usually were. The nurse came back a few minutes later with the meds and was getting ready to put them in Max’s i.v. still talking about how odd it was when it occurred to me there hadn’t been much fuss. I ventured: “You do remember he has an egg allergy.”
The reply was a gulp and a “really?” “Yes.” Well, what happens? “Worst case he stops breathing.” Another gulp. Then he checked the file and said “Well, I guess that was why it wasn’t set out.”
Yet that wasn’t even the most infuriating close call. During one not-too-long-ago hospital stay, Max was attempting to have an MRI without any sedation. It was the first time he had attempted it. The test usually takes about an hour, but between a splitting headache and an increased sensitivity to noise caused by the headache, he was just not able to stay still for long enough even though I could tell he was trying his best. After about 20 minutes, he was in tears from the pain and the situation, and the testers gave up and hastily called for an anesthesiologist to sedate him. The radiology nurse asked me to stay in the back because they no longer had the proper permission forms signed. I was sitting in an area where parents aren’t usually allowed.
The anesthesiologist arrived and was unhappy to find nothing ready and her resident a.w.o.l. I watched and listened as she called and chewed him out. Then she called Max’s neurosurgeon for what I take it was not the first time that day to try to find out which sedation drugs to use. They were planning to do another sedated lumbar puncture after the MRI, and because of his egg allergy it was more complex than usual. She wanted the surgeon to look in Max’s history from the other hospital and see what they had previously used in this situation.
As I recall it, the neurosurgeon pretty much shouted at the anesthesiologist (as I could hear him from where I was) that he was busy. She asked, well, what did he want to her to do. He told her to give Max whatever and treat the reaction if he had one. She repeated the account to the resident who had just arrived.
I still did not say anything as I was really just dumbfounded. But, I was thinking, umm, hello, you know that permission form I haven’t signed, well I don’t think I’ll be signing that now. Then the radiology nurse pointed me out to the anesthesiologist who assured me she was not going to be doing that. She proceeded to work the dosage out herself, but still it was a very confidence rattling experience.
Despite our frustration, I am not without sympathy toward the medical staff. These are world class hospitals. I appreciate having access to them. We have enough experience with them to understand they are busy places filled almost entirely with devoted doctors, nurses, aides trying to do their best and making a lot of personal sacrifices along the way. At the same time, it is often chaotic and people being people and institutions being institutions errors are made.
I can forgive a lot. I imagine, for instance, that being a pediatric neurosurgeon is about as high pressure of a job as you can get. The neurosurgeon may have been in the middle of a surgery or may have been up for hours upon hours when the anesthesiologist called for all I know. He certainly came through for Max when it was time to start cutting. When he moved on to another job, I was quite upset to lose him.
At the same time, from the parent of the patient point of view, hospital stays are not as you might initially think a time to let your guard down particularly when it comes to managing food allergies. If anything, they require even more watchfulness and more proactiveness.
Sometimes you can know a few weeks ahead that a hospital stay is imminent. In those cases, we have occasionally taken the opportunity to stock up on foods and even prepare a few treats. On one occasion, it was close to Valentine’s Day. We brought heart shaped sugar cookies, some of which he munched on and some of which we offered to the medical staff who entered his room. One of the most unexpected perks of having the cookies was it was fun for us to be able to give something back to the medical staff.
3 cups unbleached flour
2 tsp. baking powder
1 ½ cups sugar
1 cup Crisco or dairy free margarine
1 tsp. Vanilla
Preheat oven to 325.
Cream crisco and sugar.
Add flour and knead until soft dough forms.
Divide dough. Roll out in sections between wax paper until dough forms.
Cut into shapes.
Use spatula and place on cookie sheet.
Bake 15 to 17 minutes. Cool and decorate with sprinkles.