Below I am reposting (unedited, except for some misspellings and one omission that dealt with a bystander that was not relevant to the story) an email I sent to some close family and friends about our recent run-in with the health care system. I am providing a caveat here, which will be duplicated in the email, because I cannot stress enough how lucky we were and how grateful I am to modern medicine, doctors, and health care. However, none of this “in hindsight” backpeddling can change the fact that I was very angry, emotional, sad, and terrified at the time. And that I am still quite angry with the inconsistencies in my son’s care, as well as the lack of education provided by nurses, doctors, care managers, and pharmacists when they sent us home with medical equipment to continue my son’s treatment.
Enough sad. Here it is:
Dear Friends, Family:
For those who I have not directly contacted in the past few days, I apologize for the mass email — I was only able to get to the telephone to speak with a few of you, and I am hoping to spell out the details here so everyone can get the complete picture all at once. Please feel free to forward this message on to anyone you feel would like to read it.
Thank you all for your well wishes and kind words! Asher is currently sleeping peacefully in his hospital crib, his stuffed turtle sitting atop his head. The quick version is that he has a bone infection called Osteomyelitis in his left tibia and is being treated with IV antibiotics. The treatment will take three weeks, and when it is finished, he will be as good as new! According to our pediatrician (and the Infectious Disease Specialist) we caught this very early, which is a great sign. We are hoping to take him home tomorrow in the early afternoon — and for the next three weeks we will be treating him at home with antibiotics which are administered via a pic line (catheter/IV).
Before I go on, I recognize the story below is overdramatic and over-emotional, but I don’t really care. To a nurse, to a doctor, to a bystander this all sounds routine — after all, my little man is going to be just fine! But I am writing this in the throes of our first parental fright and it was a big one for us. Certainly, there are far worse things (for one, several patients just doors down from my son), but that can’t change how I feel. So, below is a meditation on emotion, fear, and seeing your child in pain, which (if I did not know before, I certainly do now) is the worst feeling I have ever had in my life thus far.
FOR THIS WHO WOULD LIKE TO KNOW MORE YOU CAN READ ON AT YOUR OWN RISK
(This is also a love letter to science, btw. Thank you, science, for being Awesome, although your awesomeness is sometimes trumped by the incompetencies of actual human beings)
The long story (and this is more for me than anyone else, as I feel the need to get this down on paper — feel free to skip!) is that last Saturday morning he had a light fall at the playground. I hesitate to call it a fall, because he simply let go of a pull-up bar set three feet above the ground, his feet nearly touching the ground (perhaps a 1-2 inch drop). He let go and landed on his feet, but afterward was in great pain and cried out. When I returned home, he did not want to stand up at all, anywhere. Amanda noticed right away that he would not put any weight on his left foot, and was instinctively pulling it up. For those unaware, he is a late walker, and just began flying around the house one month ago. So, needless to say, he was VERY upset that he could not walk.
At doctor’s orders, we gave him Children’s Motrin and put him to bed. The next morning he was still upset, cranky, and would not walk. We took him to the emergency room at Children’s downtown and they took an x-ray of his left leg. They found nothing. We were told it was likely a sprain and that he could walk on it no problem, take him home, all will be well. Our phenomenal physical therapist called to check up on Asher and was upset with the results. She (and later others) informed us that children his age do not get sprains, since their ligaments are far too elastic. She managed to get us in to see an Orthopedic doctor on Monday, who looked over the x-rays and concurred that there was no fracture (at least, no visible fracture). He diagnosed it likely as a bruise and told us to keep him off his feet (notice the distinction here from the ER doc) for a week. He told us to give him Motrin for the pain, as we had already been doing.
That night, Asher slept very little and was very upset. In the morning he had a slight fever. He did not eat much that day. By the time I came home from work, his fever was at 102. We put him to bed with Motrin again, and hoped he would be better in the morning.
He, again, had a rough night. The next morning, we left him in the care of our nanny (who deserves many medals, least of all for taking care of him during this rough week). Throughout the day she kept in contact telling us that he was finally eating a little bit. But around 1pm, she called me to say he was acting strange, seemed very listless and dazed, and was complaining about an ailment she could not identify.
This was Wednesday. We called our Doctor, and was able to bring Asher in at 3:15. When the nurse took his temperature, it was 104.5. Right away, the doctor thought something else was going on. He brought up the idea of a possible bone infection, but only as a slight curve ball. He thought it might be his hip joint, but was not sure. He told us to go back to Children’s and get a blood test (to step back, a bit, on a completely unrelated note, I took him in for a blood test on Monday due to his slowness to walk — something the doc had ordered me to do months before but I fought, since he was now walking — the test came back negative, hallelujah). The nurse there had a rough time and severely bruised both his arms attempting to get three vials of blood. He screamed “All better!” the entire time, which made it difficult for Amanda and I not to burst into weeping fits (we also found out later, that the lab screwed up and missed one of the three essential tests, the blood culture, but more on that later).
That night, we took Asher home, gave him Motrin, and spent several hours on the couch watching dumb television and attempting not to throw up with the anxiety. At 10pm we finally received a call from the doctor, telling us that the blood results showed abnormally high rates of inflammation. While high inflammation is normal with any virus, these numbers were particularly high and when combined with the limp in the leg, made the doctor concerned. He again told us to see how the night went and that if he had a fever in the morning we would need to go to the ER to get an MRI.
In the morning he was not better. He had a fever of 102 and would not eat anything. We took him to the ER again, and waited while medical students, residents, and finally doctors poked and prodded him. By the time I am writing this, I have now told the story at least 20 times to nurses and doctors alone.
The first two attempts to get an IV installed were unsuccessful and horrifying, due in part to the bruising and blown veins from the day before, and in part to his anxiousness. Asher cried out “Help!’ and “All better!” and “Great job!’ (here I am going to pause in my telling to let the wave of nausea that just washed over me pass and try hard not to cry). I had to hold him down while they made their attempts, and one particularly cantankerous nurse kept talking about how difficult he was and that he kept “clamping’ (meaning his nerves were making his blood vessels contract, making it very difficult for them to install the needle) and I was rather close to strangling her but held back as I did not have a free arm at the time.
My father arrived soon after this (what a relief!) and Asher was SO HAPPY to see him. He smiled for the first time in days and went straight into his arms. Apa then had the pleasure of helping me once again as they tried to install the IV, once again failing.
Eventually (and why they did not just fucking DO THIS THE FIRST TIME I don’t know) they brought in an IV team, along with an Ultrasound imaging device. Within twenty minutes they had a successful IV installed. They drew a small vial of blood for a blood culture (since they apparently forgot to do this Monday). And four cute nurses were around to cheer him up with smiles and iPads…
It was several hours later that we were installed in our room, still waiting to find out if he would get the MRI. He had not eaten anything since 7:30am that day, and even that was just a few bites of a cereal bar. He was asking for food and drinks and we had to tell him no, as we had been informed he could not ingest anything before they knew if they could schedule the MRI. It was not until 5:30pm that we finally got into Radiology. The moment we walked into the room Asher panicked, screaming and flailing for the door. My father held him as best he could while we spoke to the anesthesiologist. We set him down on a cot and they gave him a narcotic via IV that within moments made him go limp. He began talking in murmurs, saying “hooooney” and “aaaaall beddddddder” blinking in and out and then in moments of lucidity lashing out and screaming. This was the moment when mommy and daddy began to consider the prospect of losing it entirely. A few minutes later, a nurse picked him up in her arms and took him out of the room. He began screaming “Mommy! Moooooommy!” and this is the moment we both lost it before running out of radiology and back to his room to wait.
When he returned he was a groggy mess and could hardly keep his head up. We took him back to the room, and within a couple of hours Asher was sitting on his Apa’s lap slapping away at an unused computer keyboard, toying with his new word, “space bar.”
He would not eat anything at all, despite my persistence. The doctor called that night to inform me they had identified the Bone Infection, that they caught it early, and that they would begin treatment through his IV shortly.
That night he slept fairly well, waking up a few times as the nurses poked him a bit (rectal temps are apparently all the rage these days). He had his first IV antibiotic treatment, and it went well. The night nurse, Tess, was particularly sweet and gentle with him, doing everything she could to keep him from waking up, and she checked his vitals and hooked him up to the IV.
The next morning just as I was about to offer him some food we were again told to hold off. They needed to put him under once again to install a special IV, called a pic line, on his upper arm. And we had to wait until 10am, because that would be when we would receive the blood results from the blood draw on Wednesday (had they done this correctly on Monday, we would have already had the results, and could have done this first thing, but I digress). Thankfully, the blood culture came back negative, and the doctor was able to schedule this right away, so we were downstairs by 10am waiting to meet the anesthesiologist. This time, his doping-up went much better. He said a few silly things, grabbed his turtle, and then was whisked away.
Less than an hour later, we came in to see a very floppy, goofy baby boy. The pic line was installed perfectly, and he was good to go. We brought him back to the room, where Aunt Jessica was waiting for him with books, toys, and food. She read him a book and he laughed. She then snatched him up and held him so mommy and daddy could go eat something. When we returned, the two of them were sitting on a mat on the floor, an entire spread of food surrounding them, as he struck keys on an unplugged keyboard and gleefully took bites of pancakes, cookies, pretzels, and goldfish, in between mouthfuls of apple sauce that he spooned himself. Amanda opened a tray to reveal grilled cheese, and he grasped at it smiling, and took a big bite, grabbing pieces with relish and shoving them into his mouth.
This is the moment we truly had our boy back.
After my sister left, he continued to plow through his buffet. At one moment, he took a nibble from his spoon and said in a shy, scratchy voice (from all the drugs and screaming), “Apple Saaawce.” Then he looked at his mother and back at me and said it again. Daddy lost it and had to cover his eyes. I said, “Asher, please don’t honey, it’s too much.” He smiled a shy smile, and then said it again, “Apple Sawace” before turning to his keyboard and pounding away.
Thank you for listening.
Robby, Amanda, and Asher.