I woke up in the morning to discover that sometime in the night, Mr. Happy had decided that he no longer needed to be on oxygen. He had pulled the canula out of his nose and it was over his head like a headband. The nurse saw this while I was sleeping and decided that since no one knew how long it had been that way, Mr. Happy might be okay without a constant O2 feed, so he left it off and monitored him. Surprise! The baby knew best, after all. He did just fine on room air; his O2 levels were holding at a steady 97-100 on the monitor. So that was one more tube removed from him.
Arkansas Children’s Hospital is a teaching hospital, something we really hadn’t seen much of to this point in our experience. But in the ITU ward, every interaction I had with a doctor was actually an interaction with the Doctor In Charge of Mr. Happy’s care, and about ten interns that followed him around and got grilled on the situation. It was a bit unnerving, actually. Other than the one visit per morning with the Head Doctor I never saw him again. Instead, we had two interns who were more directly involved in Mr. Happy’s care. So on those morning rounds, I never knew exactly to which doctor I was supposed to be addressing questions and concerns!
In fact, once we arrived in the ITU, I noticed a distinct difference in the attention we received. It may have had something to do with the fact that Mr. Happy was improving so well, but I also think the disorganization of the new ward played a part. I spent most of Monday completely in the dark about Mr. Happy’s status, what tests were being done or results pending, and what the game plan was for the next step of his treatment. It was disconcerting after our experience in Intermediate Care, where we were updated almost hourly with that information.
This wing had been opened so recently, apparently hospital management had not caught on to the fact that the new wing was, from all reports, the size of a football field. Several of our nurses and techs laughingly said they were going to get pedometers to track how much they now walked at work. That stemmed from the fact that each nurse was assigned 4 patients at a time, but management had, thus far, been assigning them at all four corners of the wing. So much of the staffs time was spent in travel back and forth between rooms.
Also, no one really knew where anything was. At one point, Mr. Happy’s feeding tube starting coming out (bad thing) and when I went to get the nurse, there wasn’t a staff member for 100 feet. Not kidding. I yelled for someone (they had not given me a tour of the new room, so I didn’t know where the nurse call button was located) and ran back in to hold the tube in place. When the nurse arrived and saw what needed doing, she left to get the adhesive tape to hold it in place. It took her almost ten minutes to find it and return. This being her first shift in the new wing, she didn’t know where the tape was stored. Apparently, it took her awhile to find someone who did.
The hospital was so excellent in so many ways, I’m positive that they are correcting the staff assignment problem quickly. And in short order, I’m sure everyone will learn where supplies are located. So, I don’t hold it against the hospital in any way. It’s just that this was the situation we experienced at the time, and it did make things a little frustrating sometimes as a patient.
Anyway, late in the afternoon on Monday I got a visit from the Pediatric Gasterinterologist. He came in to discuss Mr. Happy’s tummy. That’s when I first heard that the current theory, and the one that so far had held the most weight, was that Mr. Happy had serious food allergies. (They had speculated on Sunday, but not confirmed it as the current theory.)
I must say, I L-O-V-E-D talking to that man! Ever since Mr. Charm came down with food allergies, I’ve been reading everything and anything I could find that was in layman’s terms to help me understand and deal with the issue. I joke that in the last two years I’ve given myself an unofficial Associates Degree in Food Science and Allergies, and as a consequence, most of the time when I chat with someone about these issues, I wind up teaching things to them.
It’s not a problem to teach things to people; I actually went to college to be a teacher, so I LIKE sharing new thoughts with people and educating them when I know something they don’t. However, I rarely get to talk to someone who already knows what I know AND can teach me knew information. So talking to Dr. G was a thrill!
So Dr. G explained some more about IgE and non-IgE mediated allergies, which basically I knew, but he fleshed it out quite a bit for me. It breaks down like this: IgE allergies are the ones people think of when they think of allergies. They are the ones you can do the prick test and the RAST test to discover. They are the ones that result in anapylactic shock, usually. But there are other ways to be allergic, and those are called “non-IgE mediated” allergies. They will not show up on most tests that science currently employs, but you will know they exist from observation and experience. They tend to show up with intestinal, respiratory, and other such non-specific symptoms. They are often overlooked as allergies simply because they can so closely resemble other conditions.
Example: when I went egg-free for Mr. Charm, I didn’t eat eggs for over a year. After I could eat eggs again, I noticed that I often had a cramping, many hour long tummy ache after eating them. THAT would be a sign that I probably have a non-IgE mediated allergy to egg. For me, it’s mild, and only presents when I eat straight egg, not things with egg baked into them. But it’s an example.
So, Dr. G explained, he could care less what the test results came back with, unless they came back with a positive result. That would be a clear-cut allergy. But even if all the results came back negative for allergies, he was confident that Mr. Happy was in the hospital because of his allergies.
I was willing to accept that diagnosis, but still wondered to him “How on earth could allergies cause pneumonia?”
He gave an explanation, and then asked the simple question “Is there anyone in his family that has or had allergies?”
Well, yeah. That would be me. When I was a child I had terrible problems with ear infections, sudden, unexplainable high fevers, a sharp, barking cough, and a few other symptoms that eventually led them to send me for Cystic Fibrosis testing. After two days of being tested in the hospital and finding out I was healthy in that respect, Mom and Dad were told to get me to an allergist as soon as possible. They did, and I lit up like a Christmas tree for everything they tested me for: food, animal, and environment. I spent something like 11 years on allergy shots, two shots twice a week. As of three years ago, I had my first ever clean allergy test. I finally outgrew everything at the tender age of 32.
And as soon as the story left my lips it was as if a lightbulb went off in my head. Before he even said anything I asked him “Allergies can present with intestinal and respiratory problems, right?” “Right.” He said. So, Mr. Happy takes after dear old Mom in this respect, for which I am truly sorry.
Apparently, Mr. Happy had some kind of minor infection that he was fighting off all on his own. But his allergies were getting increasingly aggravated by my breastmilk, and eventually his immune system couldn’t fight it anymore and the infection spread to his lungs and turned into pneumonia. The bloody stools were the symptom, like Mr. Charm, of his intestines and colon being aggravated and irritated by the allergens the milk was putting into their bodies.
So, yes, I now had an answer. Despite any test results that came back, Mr. Happy has food allergies (at the least) and THAT was what got him so sick, so fast.
Sigh of relief. I can handle anything as long as I know what it is. The unknown was the scariest part of this whole experience.
Still, I waited anxiously for the RAST results. Again, I want to know.
Shortly after Dr. G left, the nurse came in and said that Dr. S (head doctor) wanted someone from Speech to come in and supervise a direct feed for Mr. Happy. Speech therapists also work to make sure infants have correct latch, sucking and swallowing reflexes, and can generally sustain themselves through bottle or breastfeeding, a little fact of which I was previously unaware. Since Mr. Happy had not taken anything orally since Friday at 4:00 a.m., they needed to make sure he could eat before releasing him from the hospital. So this was to be a test run.
T from Speech came in to see us in the early evening and fed Mr. Happy a whopping ounce of formula from a bottle. He latched on to that bottle and sucked it down with no problems. So then we had to wait to see how his stomach would react to having food, and T said that if he did fine, he would be back in the morning and they would remove the feeding tube and begin normal feeds. Hooray!
So Monday was spent mostly hanging around the hospital, getting sporadic good-news updates, and going out to get food because the hospital system had decided that I was no longer a nursing mother due to Mr. Happy being on the Neocate. I chatted with the Geek, and Mr. Charm was doing great. They expected he would be released that day.
The Geek’s boss, B, came over to visit Mr. Charm in the hospital that morning. After hearing of our predicament, this wonderful man volunteered to let Mr. Charm stay with him and his family until we were back from Little Rock. We leapt at the opportunity. He is, hands down, the BEST boss I’ve ever heard of, let alone had the pleasure of dealing with in any way. His wife and twin girls are as sweet as can be, too, and I knew Mr. Charm would be quite happy with two pretty little girls to play with until we could get back home to him.
Sure enough, Mr. Charm was released Monday afternoon with a blood sugar testing kit and a follow-up appointment with our pediatrician for Tuesday at 12:45 p.m. Which, irritatingly enough, meant the Geek wouldn’t make it to Little Rock until early evening on Tuesday at the earliest.
No matter; my sweet boy had rebounded quickly and completely and was going home! I was thrilled!