It’s been almost a year since I have sat down to write a post about Daniel. The truth is up until most recently its been a beautifully quiet year. Daniel and Gwen are growing so much and they keep us on our toes everyday. Daniel has been enjoying a mostly normal life this year, with just routine doctors visits and his daily dose of anakinra. He has been able to go to daycare full time and even in the last few months in those more concerning moments when Daniel gets a fever, and cold and flu, or tummy bug, he has been able to recover normally, despite his lab tests and more frequent doctor visits.
He has gotten more verbal in the last year and expresses very clearly how he feels about things. Lately, it’s been about his “quick a bunny”. When Daniel was little and we had to do his injection each night, I would softly encourage him that we would do it “quick quick like a bunny” and then it would be all done. So ever since he could start to speak he has called his nightly injection “quick a bunny”.
I think I might have spoken a bit about his anakinra in the past and how painful and uncomfortable it is. He is such a little trooper for withstanding that needle every night, when most adults grimace at the thought of one-time travel vaccinations that last ten years or an annual flu shot. In the last year, its been easy to wonder “why are we doing this to him every night? Things have been well, is this pain really necessary to put him through? Are there any other options?”
We learned this week exactly why this is necessary and it was terrifying. First let me say though, we had an army of people – family, friends and co-workers praying Daniel through this situation and it is nothing short of a miracle that he is with us this week, so thank you all so much for your prayers.
In the last few months we have had a couple of struggles with the ordering process for Daniels anakinra; many of you know this has also been a prayer request. Our insurance company changed, and although they are 100% honouring there commitment to paying for Daniels medication the ordering process for the pharmacy became way more complicated.
They ended up having an audit done, and then were told they were no longer able to order from the supplier they had ordered from before but that they would need to order from the manufacturer. Which is absolutely fine, however this week there were some major issues. Last week, we ordered his medication and it didn’t come in in the time we were expecting. We always order with a weeks worth of medication left as to make sure we do not run out. However, this time it wasn’t enough.
On Saturday Will called the pharmacy, and they told him they wouldn’t be able to get his medication until Wednesday. We were just hearing from them on Saturday when Will called to follow up that the process had changed and it was now going to take longer. Since we had called and placed our order near the beginning of the week we were concerned this meant that we had run out of medication and we wouldn’t have another dose for the next 3 days.
We emailed Daniel’s doctor and she responded that he should be fine. So feeling still uneasy about the whole thing but reassurred by the doctor that everything should be fine, we continued on with our day. We even went to the Christmas tree farm and picked out a tree, and roasted marshmallows and had a very special day with the kids.
Sunday night rolled around, and Daniel was thrilled when I told him that his doctor said it was ok if we didn’t do “quick a bunny” tonight. I tucked him into bed at 7:45, sang his song and a kiss, and we went about our evening.
At about 1:00 am I was up for whatever reason and decided to check in on Daniel. He was laying in bed, making the saddest little sound. I kissed him and felt fire. I immediately ran downstairs and checked his temperature. His temperature was 103.
I got him some motrin and tylenol, and kept an eye on him through the night. By the morning his temperature had barely gone down at all with the medication. He was gagging in pain, and asking me to carry him because “mommy my legs hurt” (his arthritis was back, in less than 12 hours) first thing that morning I emailed his doctor. At about 10:00 am I called his nurse, who said she would talk to his doctor and get back to us. At 12 after still no response from his doctor, I made the call and packed him up and drove to emergency. It’s frustrating at times, and I know many of you can relate. When you are in emergency and no one around you seems to think that you have an emergency but you! They repeat questions and seem to take forever to have someone assess the situation. Often times a med student comes in first, bless their heart. But I was terrified and needed to know what was happening in my son’s body immediately. As you may recall MAS is still an issue for Daniel and MAS is not an issue that waits for anyone. It moves rapidly and can start shutting down major organs in the matter of minutes.
Less than 24 hours after missing one dose, and Daniel’s life was at risk. So if we ever doubted before that giving him that one injection was worth it, we now know, that he thrives because of this medication. This drug is life-saving.
As a result of support from the Autoinflammatory Alliance, alot of prayers and a selfless delivery man, Daniel is at home recovering fine. But I want to share with you in more detail about our week in hospital, so I am going to finish this post here. Please keep an eye out for my next post later this weekend, thank you so much for your ongoing support of Daniel and our family and for taking the time to read about our journey.