Surgery to repair Jason's palate and to insert ear tubes was on a Friday. He was discharged on Saturday. Because he has a penicillin allergy and was doing exceptionally well, the surgeon's medical assistant decided to forgo the antibiotic that typically is prescribed after this surgery because the drug of choice was unavailable at our pharmacy. About twelve hours after discharge (in the wee hours of Sunday) he had a temperature of 102.6 and foul odor from the surgical site. Both of those things were listed in discharge instructions as reasons to immediately call the doctor. I talked to the medical assistant who decided that we should find the antibiotic and start Jason on it. John ended up driving to a pharmacy some distance away that had the drug we needed, but his prescription drug policy wouldn't pay for it because it wasn't at an allowed pharmacy. Thankfully, the cash price, while not cheap, was within reach. The antibiotic was started early Sunday morning.
During all this I was still giving Jason Tylenol and Motrin around the clock for pain. On Monday I decided to discontinue that and see how he managed. His fever continued, but he didn't seem to have troublesome pain. I called the surgeon's office again Monday afternoon because the fever wasn't subsiding even though he'd been on the antibiotic for 36 hours. They assured me that he was probably fine - maybe just getting a "little cold or something."
Tuesday the fever persisted. I called the surgeon's office again with the same result. I called the pediatrician's office where I took him that afternoon. The doctor there couldn't find anything wrong. She concluded that he was still in considerable pain and told me to start the Tylenol/Motrin routine again. During the night Tuesday Jason's fever climbed to nearly 104 in spite of the fever reducers. By this time I was so worried about the possibility that Jason had contracted a hospital bug of some sort. Nothing else made sense. I called the pediatrician in the middle of night who suggested that we take him to emergency and investigate. While there Jason was catheterized to check for a bladder infection, had a chest x-ray and had an IV inserted, first for a blood draw and secondly, for potential treatment. (I actually appreciated that because he would have only had one poke no matter what they needed to do.) The urine was negative. The blood count showed an elevated white count, indicative of infection. The x-ray, we were told, showed some pneumonia. We took Jason home, satisfied that we had found an answer.
Wednesday Jason showed no improvement. Though on the strong antibiotic for three days and continual fever reducers his temperature remained persistently in the 103 - 104 range. At that point, I was scared. Only a hospital bug, I told myself, could be so stubborn. I called the pediatrician again. He was quite alarmed too, and gladly saw Jason. Reading the radiologist's report of Jason's chest x-ray he learned that there wasn't any pneumonia; it was only a shadow that the ER doctor saw. He recommended admitting Jason to the hospital to determine the cause of infection, though frustrated that he had been given antibiotics before determining the culprit. (The presence of antibiotics did not allow for accurate culturing of the the blood and urine.) The pediatrician expressed displeasure that the surgeon had not been in contact with us at all himself. He really wanted him to check the surgical site. At the pediatrician's direction we took Jason to emergency again to be admitted.
The emergency room was crowded and dirty. We waited about five hours before getting to a room. That is still one of my biggest frustrations about the whole ordeal. Parents had children there for pretty minor things. I saw one report that concluded the child had ringworm, an innocuous fungus which can be successfully treated with vinegar. (Just briefly, I might say here that if we end up with universal health care it will be many times worse than that! Our Canadian and Brazilian friends tell horrible stories of their respective government managed health care.) While in emergency they started two IVs because the first one, in the foot, was accidentally pulled loose by one of the health care workers.
They swabbed the good side of his nose to check for RSV - twice so they could avoid the surgery site and fool the lab into thinking they had been thorough and done both sides. That was done solely for the purpose of bed placement. The CDC (thankfully, I must concede) has protocol for the placement of children in shared rooms. Non RSV patients get other non RSV patients for roommates. Jason's swab was negative, thus he was placed with a child who was also negative. However, because the swab had to be cultured for a period time to determine a definite negative, all health care workers were put under RSV protocol. (This was just so silly. All the nurses and doctors complained, some even to the CDC snitch, a.k.a. bed placement personnel, to no avail. In fact, the restriction was not lifted even after the RSV culture came back negative.)
This was a happy moment with Dad during our long ER wait in spite of the high fever and steady prodding by staff.
Thursday and Friday are a blur to me. During those two days multiple doctors came to check Jason and listen to the whole story. (John teased me once for sighing heavily when I was asked by yet another doctor to tell what had brought us to the current situation.) More blood was sent to the lab necessitating more needles poking, sometimes in multiple places before successfully getting the required sample. His white count was more typical of a bacterial infection. He had his IV replaced again when one failed. He was given two very powerful antibiotics and watched closely for any clues. The surgeon came and determined that the surgery site looked fine. He maintained that it was probably a virus or something. All others were clueless and very concerned.
Saturday came bringing a rash! I knew what that meant without a doctor's help. He had roseola, a harmless childhood virus with seemingly alarming symptoms. That rash was beautiful to everyone! It was a wonderful answer to all our questions. Thank God for His mercy!
We took Jason home Sunday afternoon, ten days after surgery.
Sadly, the story doesn't end there. In some ways the end of it is the beginning of another. Since that ordeal Jason has been terrified of people other than those with whom he lives. He is tougher and less affectionate with his siblings. He has become a fearful child, coming near panic in unfamiliar circumstances. Already these things are less than what they were right after the hospital stay. Somehow, though, I think they will be a part of what he struggles with over the years. I think he will not be what he would have been if these events had not transpired. I am not being a doom sayer; he will likely be better for it - stronger and more compassionate. In some way, though, it hurts that mother's heart that hopes to rescue her little ones from all harm.
P.S. The pediatrician said he had never seen a surgery patient coincidentally get roseola at the same time. We both concluded that we would do the same thing all over again.
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