Hit Me With Your Best Shot

Well, we're back at Helen DeVos Children's Hospital and began the ACTH treatment today. They have him all hooked up to the monitors and has had a chest x-ray, urine sample, blood draw (which again, they had to poke him 4 times to get enough blood) and his first dose of ACTH. After they finally got enough blood,  he just looks over at me with sad little eyes and gave me this look like "Not again, Mom! Why are you doing this to me??." It is so incredibly hard to watch him go through all this and know there is nothing I can do to make the pain stop. The poor thing, I don't know if there is any place that he hasn't been poked and prodded.

Mike and I spent part of this afternoon practicing drawing from a vial and learning how and where to give the shot. I'm petrified, I can't believe they think I'm qualified to give him two shots a day! You have to be so careful to keep everything sterile and not touch anything that will touch him and you have to give the exact amount. It's not like accidentally giving too much Tylenol. It's a good thing they are setting us up with a visiting nurse when we go home. He or she will come 3 times a week to monitor his blood pressure and glucose levels and other vitals. All of this just makes me really nervous for the coming weeks. Besides the irritability, high blood pressure, diabetes, low immunity, ulcers and insatiable hunger I've been warned of, there is just so much that goes with caring for him during this treatment. I have to test his urine everyday, his blood pressure 3 times a week, watch like a hawk for the first signs of infection and give the shots twice a day. Besides the ACTH, he will also continue to take his Topomax, Vigabatrin and Carnatine and they're putting him on a stomach protector to hopefully avoid ulcers. I can't really take him anywhere because of the risk of infection, so I'll basically be a hermit for the next 6 weeks. I will welcome visitors :o) On top of all that, I have to try to find time to care for his 2 1/2 year old big brother! I am just praying for peace and strength to get through the next several weeks. My biggest fear is that after putting him through all this hell, the spasms don't stop. I honestly don't know if I will have the strength to handle that.

Dominic has continued to have the spasms today, but it's not surprising. They hope to see a decrease in them by day 3 on the ACTH, but we may not really know if it's working until after 2 weeks. The goal is for the spasms to stop and wean him off the Vigabatrin, then ACTH and have him continue on the Topomax indefinitely. I'm trying not to get my hopes up that this will stop the spams. Maybe that way, if I'm prepared for the worst, I'll be pleasantly surprised.



On a final note, Mike and I just wanted to thank you all for your prayers. I swear half of America is praying for him. From our family and closest friends, to incredible co-workers, to complete strangers, there are SO many people praying for him. Just last weekend, the Archbishop of Chicago was visiting our church and he blessed Dominic and said he would hold him in his prayers as well. We feel so fortunate to have such an incredible support system, so thank you all so much!