Ok so as promised, here is part two of this week’s adventure.
Daniel and I are sitting in the emergency room waiting to be seen: he has missed his medication and as a result is in the midst of a full blown flare-he has high fever, arthritis, pain. The doctors do his lab work and immediately start an IV since he hadn’t been eating or drinking at all that day. When his labs came back his doctor shared with me that the inflammation was everywhere and his ferritin levels (the number that tracks the MAS in his blood) are increasing quickly.
The day before I had contacted the hospital to see if they had a single dose of his medication there so that we wouldn’t miss a dose, and they had informed me the hospital didn’t carry that medication at all. So I already knew the hospital couldn’t provide the medication that Daniel needed.
After the confirmation from his doctor about what his blood work was showing I jumped into full blown mommy mode and started doing everything in my power to get those drugs. I didn’t know what I could do, but I knew I had to do something because no one else was. When I asked the doctor if they could try and find someone who had the drug they said they probably wouldn’t have any luck getting it.
I remembered during our stay at Sick Kids that they had had some at the hospital which was how they ended up trying the drug on Daniel in the first place. Daniel had had a wonderful doctor there, but the doctor who is the head of Rheumatology in all of Canada was also at Sick Kids, so I emailed him directly. I didn’t know if that was appropriate of me, but to be honest in the moment I didn’t care.
I also sent a facebook post out to my friends at the autoinflammatory alliance-they are an amazing organization that works to support individuals in situations like Daniel’s, who suffer from some kind of chronic autoinflammatory disorder. They are a support network but they also help through raising donations to fund the medical research associated with this illness (and for someone in Daniels case who is undiagnosed, those funds means more potential for answers in the future).
It wasn’t long after I sent that email to Sick Kids that Daniel’s Rheumatologist came down to the Emergency Room. She did a full examination of him and was quite concerned about what she saw. She mentioned that Doctor Laxer (the doctor at Sicks Kids that I emailed) had contacted her to let her know that Sick Kids didn’t have the drug, so unfortunately they couldn’t ship it to us.
Daniel was tachycardic: his heart rate was really high and his blood pressure was steadily increasing. His doctors were really concerned. The autoinflammatory alliance jumped into action at my plea and they contacted the manufacturer – after explaining to them that as a result of one missed dose that my son was in hospital and that to miss even one dose has resulted in a potentially fatal situation for my three year old. The manufacturer told the alliance to let me know they would contact me, after some difficulty with emails and calls (since I was using hospital wifi) we were able to touch base with a senior rep who was CC’ing the CEO throughout our conversation. She finally let me know they would ship the drugs out in the morning. I explained that we needed the drug yesterday and expressed my deepest concern that waiting until the next day may prove to be a fatal situation for Daniel.
She explained that the weather was really bad, and they had to have it driven from Toronto, but that she would see if any of her drivers was willing to bring it to the hospital tonight.
After just a couple of minutes while we were still on the phone she said “Ok, there is a driver here who is able to go, it may take him a couple of hours, but he is on the way.”
An hour went by than two, his rheumatologist came in again and with a very concerned look on her face, looked at me and said “where is his drug?” She knew already it was on the way, but we were all worried. In some cases they may have started steroids to control the blood disorder but because there was so much inflammation and he was still tachycardic adding steroids may have elevated his heart rate even more and they had already explained that his heart rate was high for an adult.
I called the manufacturer back just to see if they had an update, and she apologized she said the driver is on his way but he is stuck in traffic. There was nothing to do but wait and pray, and hold hands with my little cutie. I knew the army of friends, family and coworkers were praying too so Will and I waited in the peace that the God we serve is in control of each detail of Daniel’s life.
It felt like forever (but it was probably no more than an hour. While the nurses were assessing Daniel the delivery man walked in. I don’t think I was ever so excited to see someone in my life. He was carrying Daniels meds in a large cooler, because of course his medication needs to stay cold. He put it down and looked at me and quietly said “momma, I was praying my whole way here.” He took my hand “have faith, your little boy is going to be okay”.
For those of you who have read the New Testament, I feel like I had a little glimpse into the life of the Leader who’s little girl was raised back to life by Jesus. Mark 5:21-43, “Overhearing what they said, Jesus told him, “Don’t be afraid; just believe.”He took her by the hand and said to her, “Talitha koum!” (which means “Little girl, I say to you, get up!”). Immediately the girl stood up and began to walk around (she was twelve years old).
I gave Daniel his injection, he responded with “Thank you mommy, for fixing me, now I can start to feel better.”
The doctors came in another hour later, by this time it is now 9 pm. To let us know Daniel’s room was ready and that they wanted to send him for chest x-rays to rule out any additional infection.
After a chest x-ray we bunkered in to our hospital room for the night. The next morning Daniel was sitting up, pushing my hair back he exclaimed “Mommy, I am feeling better, can I have some breakfast”.
He was still tachycardic and his legs were still in pain, but his fever was gone. The nurse said he hadn’t had fever most of the night. Within a matter of hours he was starting to recover, he was “getting up”.