A couple of weeks ago, Dominic had his second bone density infusion. The purpose behind these infusions is to help strengthen his bones, and build density. Long-term steroid use (being necessary because of his having the condition Duchenne muscular dystrophy) has caused his bones to lose density, which in turn, weakens them significantly.
At the outset, I'm happy to report that this particular infusion was a success. A success for Dominic is that he was actually able to complete the procedure - at the moment, it's too early to tell is his bones have regained any of the lost density. The reason why completing the procedure is seen as a success, is because during the diagnosis of Dominic's condition, a nurse struggled to find a vein during a genetic screening test. She commenced on his left arm because of previous successes, but soon found that she couldn't easily get one (a vein). The poor kid was writhing in my arms and screaming the hospital down. A second nurse was called in and they each took an arm and went to work. The new nurse was the first to get the required blood for the screening, and since this experience, Dominic has (quite rightly) been wary of having anyone put a needle near his arm.
With this knowledge, the endocrinologist who has ordered the infusions, has also been organising, what the hospital calls, their 'fairy' team. F.A.I.R.Y. is an acronym for something more offical, that I cannot for the life of me remember, but the essential gist of the fairy team is that they are specialised nurses whose job it is to insert needles in the arms of children with little to no pain, using an ultrasound machine to find the vein. It works really well, although, the first time Dominic was presented to a room with the ultrasound, he wigged out because his little mind thought that the ultrasound machine inserted the needle, not the nurse! He was unable to articulate his fears, and got really upset, so we needed to abort that infusion and rebook another time (this was during his first infusion). After we got home, he had been able to tell me why he was so upset and it finally made sense that he thought the machine was going to do it. Poor kid!
On the day of this particular infusion, we arrived at the specified time for our appointment (10:00am) and the nurses began by putting numbing cream onto about four different places on his arms - all the possibilities where the needle might be inserted. They numb multiple options in case one doesn't work and they need to move to another one. Rarely the case, but I appreciate the forethought in pre-numbing areas so that if it doesn't work at the first site, they can move to the next without having to apply more cream and waiting for another 20 - 30 minutes while the new site numbs. Anyway, they put on the numbing cream, and then we settled in while the cream begin numbing his skin. Now, our wait time was supposed to be about 30 minutes - long enough for the numbing cream to take full effect. Then, the fairy nurse was coming to the ward to help another child and while they were there, they were going to do Dominic's needle too.
Makes sense.
I saw the fairy nurse arrive at about the appointed time, and she went and sorted out the other child first, and then I watched as she approached us, then turn in the opposite direction and walk out of the ward. Huh? I though she was going to get my son's needle done at the same time as the other one. There's essentially two parts to the infusion procedure - getting the needle in a vein, and then infusing the required medicine. Without the needle, the infusion itself cannot happen. So, imagine my surprise as the person who was going to complete part one of the procedure wandered off without so much as a hello.
We were informed by the nurse caring for Dominic that there was an infant downstairs who had been booked ahead of Dominic and that the fairy nurse would return soon. Please, correct me if I'm out of place here, but wouldn't you consider booking the fairy nurse for each patient so that they aren't left waiting for lengthy periods of time. For example, our appointment was scheduled for 10:am - you know it'll take about 30 minutes for the numbing cream to work, so don't you book the needle inserting professionals at 10:30am? Is it just me, or is that common sense?!?
It was about 11:30am when the fairy nurse returned to get the needle sorted out, so Dominic had only been worrying about this for an hour and a half! Now we have a child who doesn't like needles because of a traumatic experience two years ago, he doesn't like this procedure because of the scare he had thinking the ultrasound machine inserted the needle, and now he's been sitting in the hospital for 90 minutes with numbing cream on his arm thinking who knows what about the procedure. What could possibly go wrong!
They moved us to the procedure room and sat Dominic on the bed. The fairy nurse wheeled the equipment into the room and I positioned myself behind his head. A different nurse got a sedative prepared (Oh yeah! He needed a sedative when we finally got the first infusion booked, because his misinterpretation of the ultrasound machine scared him so much that they decided to administer said sedative to relax him before using the ultrasound). This goes up his nose to relax him, however, he refused it. Each time the nurse brought it near his nose, he moved his head and swatted it away. The poor little guy. Everyone in that room was so patient with him, and I'm forever grateful to the training that the staff at a women's and children's hospital go through.
He was not wanting the sedative (it turns out he didn't like the taste the last time he had it) and his only options for getting the needle inserted were to have the sedative or just go right to the ultrasound. After about 40 minutes in that little room, he opted for no sedative and to go straight to the ultrasound, and imagine my pride, when he let the fairy nurse insert the needle on the first try in less than the time it took to write this sentence. Super proud Dad moment! (It's also good, because the sedative isn't something they like to use all the time - it's reserved for using a couple of times with the idea of providing the child with a couple of pleasant experiences of getting a needle inserted and then gradually weaning them off it.)
Post successful needle insert we headed back to his bay for the infusion. He climbed into his mice comfy recliner and waited another ten minutes or so while the nurses prepped the medicine. Once that was connected and infusing, it was all downhill. Only thirty minutes for the infusion to finish, then they flush the line and he's out of there.
It's a lot of build up and stress for the poor boy, but I know he has these for good reason. I'm really proud of how he stuck with it and in the end, opted for the less comfortable route of not having the sedative. He won in that instance and has proven to himself now that he can overcome fear, even when it's very real and in his face. I don't think he realises just how brave he is, but I told him a lot, and the nurses were great at offering their encouragement as well.
He doesn't need another one of these for about 6 months now, which will be nice for him. He'll get a bone density scan soon to see if they've made a difference to the bones, and when we know if they're working or not, we can determine how to move forward, but for now, my boy has accomplished such a great deal - he's faced adversity and scaled it, leaving me so proud.