Before it all started he was doing good enough to come down off his intravenous steroid dose. I was stoked because I was feeling good about it. Any symptom or change I could explain. I want to explain. Sometimes I think I make myself explain just to avoid these symptoms that are so minimal....
January..........wow he is grouchy. He must be coming down with something. Maybe a tummy bug. End of January an infection on the top of his toe from a tiny cut. Must be the antibiotics making him grumpy and causing tummy pain. A stomach virus for a week didn't help.
February.......wow he sure is grouchy. Not happy about life. Only things that indulge him like food and video games make him happy. Maybe he is spoiled. Surgery to remove calcium for the first time. Followed by antibiotics again for suspected infection of incision. Antibiotics must be bothering his tummy. He didn't want to eat steak. Weird gestures when eating but not consistent. No choking.
March.......so grumpy. Infections of multiple calcium deposits that cause a whole lot of pain not from surgery, just all by themselves are surfacing. More antibiotics. More down time. In the hospital for a week for pain...more antibiotics. Labs elevated a little bit but explainable with what could be an infection. Ran Rituxan because.......calcium is scary, painful, and deforming. Our doctor felt it was time to make sure we just not sitting there while new ones could form. But as far as we could tell they were not.
April....just when I thought I couldn't take it anymore. The emotional distress this was causing me was really starting to wear on me. Like my heart was being scrubbed on by a giant nail file. The not knowing, not sure, some good, some bad. Lots of missed school, lots of down time. More and more complaining. And another infection of calcium deposits to confuse thing. This time we went without antibiotics. We wanted to see if the pain it causes him is just the pain of the calcium exploding out of his skin. Horrible. So bad we have to give him narcotic and iv tordal. Driving to the hospital every day to get iv pain meds. We managed.
To my delight, and anxiety.....my 40th birthday brought an amazing trip to Vegas with some of the most wonderful people in my life. I reluctantly let go and went. I was 2 hours away, a quick plane ride. My husband was here to manage everything with my brother in law. They did amazing. My husband even drove him to the hospital for pain medication and then took him to a baseball game. I had labs drawn before I left so they were ready for when we returned. Our appointment was the day after I returned from my trip.
My suspicions I don't want to say have been right all along. But finally......finally the labs are cooperating. They trended up. So much so the complaints of my legs hurt, my arms hurt, my everything hurts, my FEET..always complaining.....The tummy is the number one complaint. So that is what we are going after first. Friday he will be put under once again, and scoped. If the results of the scope are not good, it will take us in one direction. If they are fine it will take us in another. We want to try another medication....but we have too wait for Rituxan to kick in. If it doesn't.......than this is this and that is that, when, and then......its all so complicated trying to figure it out. I even considered some of it is psychological. We even have a doctor for that. But I still like the aggressiveness and knowledge of our doctor. I like she realizes we can't afford "wait and see". Gary immune system can be evil and up to no good. No one wants to wait and see what it has in store for us next.
Best part is Gary came back the other day. And by that I mean the happy go lucky child. The 8 year old we have not seen in some time.....he was in a good mood. He even went to school for half the day. I picked up, he looked exhausted, and heliotroped out but.....he did it.
I was so glad for Vegas....God knows when your about to crack. It is hard to get yourself to stop fretting once you start. Especially when it is driven by instinct of a mother that something is wrong!! I came back, refreshed, renewed, and ready to keep battling. I think Gary even enjoyed spending time with his brother and sister, and his Dad. Not that we don't love love love each other.....but when someone has pain the way he has had for so many many months...it is such a strain. An indescribable strain on both of us. It exhausts us. Doing constant wound care. A few times we talked about going to the hospital so we could get the help of a nurse and not have to worry so much about every little detail. But its not easy there either so we managed at home. He is such a good kid. We can't wait to come out the other side of this dark tunnel. Every time we think we see that pin point of light, we seem to take a detour.
Non highlight: Poor Gary had an awful time getting his stitches removed. So awful the nurse accidentally poked herself through her glove. It is known in the medical industry as a blood pathogen exchange accident. It meant some labs being sent to make sure no one has anything to exchange. It never occurred to me to be worried Gary could be on the receiving end of that. Chances are so very low, I will not give it another thought.
If anyone needs me, I will most likely be at Childrens. (But poor me was in VEGAS last week at this time. Blessed!)