Last week was one of those weeks. The kind of week that starts at 5am on Monday with a sweet little boy crying because his ear hurts. The same ear that I’ve been taking him to the doctor for now over a month that they keep telling me is fine; he’s just overly sensitive to the tube coming out because of his sensory issues. You know paranoid mother, kid with autism who couldn’t possibly know that his ear hurts.
An hour or so later big sister wakes up to more asthma problems. The decision is made that she can go to school but that we’d try to get a doctor’s appointment for later in the day. Although our primary pediatrician isn’t in the office we make an appointment with our back up pediatrician.
A few hours later Caden screams for me to come upstairs and I head into the family room to see blood pouring from his ear. I call the back-up pediatrician’s office back and ask if they will see Caden as well to which they agree. Fast forward throughout the afternoon as his fever inches up until it tops out around 104 with Tylenol.
Arrival at the clinic was eventful. Caden was having difficulty walking so Dan dropped us all off at the door. I asked the volunteer for a wheelchair. You know one of those dozen or so wheelchairs that they keep inside the clinic door for patient use? Apparently she saw no reason that a child should need a wheelchair and then proceeded to grill me about the service dog. There are a few questions, two to be exact, that a business can ask about a service dog: is this a service dog and what services does he/she perform? The question she went with? So what’s wrong with him [him, of course being Caden]. We eventually got our wheelchair and service dog in the door but the whole process was ridiculous and I’m not ashamed to say that I reported it to the check in receptionist as well as the nurse. You know what they say about a mama bear, not to mention a mama bear with sick cubs.
Eventually the doctor determined that Caden’s eardrum had perforated and that the tube (you know the tube that I had been asking about for weeks) had turned and was headed into the middle eardrum instead of out. Since he was so sick, the doctor gave him an antibiotic injection and put him on a course of steroids in addition to the antibiotics that he was already on for a sinus infection. Big sister’s asthma medications were adjusted with the plan of adding in steroids if the new higher dose asthma medications didn’t work. And we headed home—I didn’t even steal the wheelchair although I’m sure the volunteer was quite concerned about what I was going to do with it since a child couldn’t possibly ever need one.
On Tuesday Caden and I went to see the ENT Nurse Practioner who confirmed the doctor’s opinion of Caden’s ear drum. We played the steroid/fever hallucinations game all day as well as again on Wednesday. Steroids aren’t ever a pleasant experience but neurological disorders seem to make them that much more challenging. Caden imagined conversations with us and then was upset that we didn’t remember them as well as television shows we watched in the middle of the night and then was upset that we couldn’t replay them. For a child who doesn’t register pain in the usual fashion, he has been pretty vocal about his ear hurting and even more vocal in wanting us to fix it.
Because Ry’s asthma was still questionable, Dan chaperoned an out-of-state fieldtrip for her class on Thursday. I decided to try taking Caden to campus since I only have one class on Thursdays. He was his usual cute charming little self around the college girls. I was once again thankful for his ipad until his youtube video used the word boring. Remember Caden likes to repeat words over and over and over. Guess what word he decided was appropriate to randomly utter throughout my lecture—yep the word of the day was b-o-r-i-n-g. I’m sure he was only saying what my students were thinking but it still wasn’t quite the ego booster that I needed for the week. On Friday Dan was able to stay home with both kids—never to be outdone, Ryley woke up sick as well. Caden and I visited the pediatrician again Friday afternoon but really didn’t get any new ideas so we’ll be stalking the ENT’s office for an appointment this week.
Illness isn’t ever an easy thing to watch as a parent. Illness plus autism though always means regression in our household. The last few days have been a downward spiral of loss of words and increasing frustration—some of which will [hopefully] disappear as we conclude the steroids. I’m concerned that we will be facing surgery in the next few weeks which will be Caden’s third surgery in 4 or 5 months and he may be facing some [hopefully] temporary hearing loss. Sometimes you wonder how much a little boy can handle or how many challenges the universe plans to throw at him. I’m sure I’d be curled up in a corner somewhere by now but Caden just handles it like Caden. He keeps swallowing the medications we give him no matter how many there are, tries really hard to take it easy, and really only asks if he can have a new ipad game every 2 or 3 minutes. He’s trying really hard to be a good listener—a fact that was proven tonight when he wanted to sit beside his sister but the infamous cat Henry Pickles was sitting there. She told him to just kick Henry Pickles out of the way—thankfully Henry Pickles has a hard head and dad was quick to intervene before Ry remembered that her baby brother is quite literal. What can I say—it’s all just another week in Caden’s tale.