There are many of you that do not know the whole story and some who would like to follow along. Rather than use email and Facebook I thought this would be the best venue to share Alex’s updates and information about what happened.
On Sunday, July 11th we were at a kids birthday party and Alex was feeling so poorly that he asked to go home early. That evening he developed a fever which I treated with Tylenol and he slept. The next day he also began complaining of a sore throat. Since Jason had been treated for Strep throat less than a month before I took him to the local med clinic (it’s a new clinic, so no waiting in line – yay!) where the doctor took one look at his throat and prescribed antibiotics. He also mentioned that there was the beginning of an ear infection on the right side. The doctor did NOT take a throat swab. Note to all of you: always get a throat swab BEFORE taking antibiotics. We may have been able to avoid some of this if that had been done.
By Tuesday afternoon there was no improvement but a quick phone call to the doctor’s office told me that most antibiotics take 24 – 48 hours to begin working so I should wait a bit. I also phoned the Healthlink line that evening and was told the same thing.
Wedesday July 14th still no improvement. I phoned the pediatrician’s office at this point and they told me it can take 72 hours, so still to wait. I was getting a little frustrated but what can I do when the pediatrician’s receptionist/nurse tells me that the doctor would not do anything even if I brought him in? That evening Alex started to complain of neck pain but it wasn’t unreasonable considering the amount of time he was spending sleeping, sometimes at odd angles on top of his stuffies.
Thursday July 15th: no improvement. By this point he had been on antibiotics for three full days of treatment. I phoned the pediatrician’s office again and this time was asked to come in immediately. The doctor looked him over, checked his ears and listened to his chest. He also examined his neck. Diagnosis: stiff neck due to muscle strain, begin using Advil for children along with Tylenol to combat both the fever and inflammation in the neck. Call the next day if no improvement.
Thursday evening Alex’s stomach was starting to bother him. Four days of nothing but Advil, Tylenol, antibiotics and milk were taking their toll. I had to give him Pepto bismol a few times to calm him down enough to sleep. Even then he would only sleep about 20-30 minutes at a time. Jason and I were starting to be worn out as well as Alex. And how can a kid sleep when he is in pain? And how can he get better without sleeping? Frustration increased…
Friday July 17th: We are all exhausted and ready to be done. I take Alex back to the pediatrician who tells me to take him to the Stollery emergency. So the four of us go in and get Alex checked out by the doctors there. After blood samples and tests are run the doctor there tells us that he believes Alex has a virus, a really nasty virus that will go away on its own given time. We ask for some better pain medication since there is no way he can fight this thing without sleep and he hasn’t been sleeping. The doctor obliges us with a prescription for something a little stronger than Advil and sends us home.
Friday night Alex doesn’t sleep more than 20 minutes at a time and Jason has had enough. At 6:30 am he takes Alex back to the emergency at the Stollery and they immediately issue a whole bunch more tests that they did not want to put Alex through the day before: more bloodwork, IV setup, spinal tap, etc. Troy and I join them a little later in the morning and I am able to accompany Alex for an ultrasound of his stomach as well as a head CT scan. It’s amazing what they can do when they begin to be concerned for someone.
On the way to the ultrasound Alex sits up on the bed and looks straight at me. Or at least his left eye does. He looks like a deer in headlights but his left eye stares right at me while the right looks around wildly, it is one of the scariest things that I have ever seen. The nurses accompanying us don’t seem too concerned yet but his eyes get checked out regularly from this point on. They figure that there is inflammation in his head due to the ear infections, etc. that has put pressure on his eye from behind.
The head CT shows a double ear infection that has inflamed so badly that the porous bones behind the ears are filled with fluid/pus. The spinal tap is inspected and has some inflammation evident. No one is saying the word ‘meningitis’ yet but it seems to be going that way. Apparently meningitis includes vomiting, diarrhea, SOMETHING more than the symptoms that Alex has which are just fever, neck stiffness and headache, as well as a sore stomach now that he’s been on meds for so long.
The doctors decide to start a rigourous course of IV antibiotics and even antivirals while they wait for the results of the cultures that they started on Friday. No one wants to wait to find out what it is so they treat for everything. He is on 7 different IV drugs plus Tylenol for pain. We have asked for something stronger since Alex is still not sleeping and in lots of pain so we ask for something to help him sleep. They refuse to give him anything stronger since they need to be able to monitor his progress and responsiveness, something they cannot do if he’s out of it.
Since they do not know what has infected him Alex is on a contact quarantine. People who are in contact with him must wear yellow gowns, gloves and sometimes masks. This continues throughout the next week on and off depending on what suspicion the doctors have as to what he is contaminated with (it’s bacteria, it’s a virus, it’s a genetic reaction to something…blah blah blah).
Saturday afternoon we meet Dr. R. who is to be Alex’s doctor for most of his stay at the Stollery. We come to really appreciate his efforts and attention to Alex over the course of the next nearly 2 weeks until he is gone. Seems that local pediatricians take turns working long periods of time (Dr. R. was here for two weeks straight every day) in order to ensure continuity of care. Dr. R. listens and takes every complaint Alex makes very seriously, ordering extra tests and specialists to investigate any possibilities that may explain his pain. Within the first two days a radiologist, hematologist, cardiologist and rheumatologist have been consulted.
Part II coming soon...
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