Painful day

Sadly, we are reporting that my favorite 9 year old awoke this morning, hand held over his left ci-"Ouch, it hurts, it's real tender." Although I saw nothing, I saw enough. With disappointment on my face, I touched his head, he flinched. I sent him to the shower while I tried to collect my thoughts.

He was in great spirits and with a dose of ibuprofen, he was fine. I emailed the surgeon and nurse who have either been expecting or fearing my news. I had every intention to go to the gym this morning but I took them to school and changed my mind.

I stopped by the Principal's office since both of my kids were in there reporting the events of yesterday's bus ride (they only ride when I work at the high school)when the same kid who was picking on him a couple of months ago at school, got him again on the bus. This time, my kids were furious, and they let her know it!! I was proud. They went to class, and I discussed w/her briefly my thoughts on future education for my kids and she gave me advice and input which I truly appreciate. Still a nervous wreck, afraid my child would be wearing another PICC line next week, I donated a few tears to her office. She accepted them and I moved to the nurse's office.

The nurse and I seem to talk regularly. This is her first year at our school but she's grown quite fond of my kiddos. She takes really good care of them, and I trust her enough to leave Gage at school as he goes through this all again. I didn't let him wear his processor on that side but his wonderful teacher can handle the strained communication with ease. I could only elude them to what I predicted might happen as we conversed in private...."likely a PICC line soon, followed by removal if that doesn't work." I looked back and my child as I left and he said in front of his whole class, "Mama, I don't want another surgery." The concern could be seen on several of their tiny nine year old faces. One kid followed me out in the hall, "Val, is Gage gonna have surgery again?" and when I could only offer an I hope not, he hung his head low and shook it side to side and said, "Oh, I hope not!" (I just love his friends!!)

As it turns out, we were informed that it's not likely we'll win the battle if the device is infected again, removal is likely. Although I already knew it anyway, the shock of hearing it upfront proved to be too much. I barely made it to the bathroom before I threw up. I sobbed so heavily I couldn't even go to the gym and I wondered if I could even go to work. That's the beauty of prayer. I am only human. I'm not cool and calm which many have imagined that I am. But when I pray, I feel better. My tears cease, and I can hold my head my high because I know what direction to go. Crying in the bathroom floor was no long term solution.

By the end of the day, the doctor had called some other great ci surgeons and the final decision is to go ahead and put him on 6 weeks of antibiotics (2 types-strong) and a steroid and as recommended by the pharmacist, a side order of pro-biotics. So likely (if things go as they did like the last infection) he'll show no signs or symptoms while on these meds. And if that don't work-we are up for removal (again) and I have no intentions at this point of putting another one in. He's had enough, it takes him too long to heal as it is......and we'll cross that bridge when we get there. But I'm exhausted, and I have to work tomorrow, so I'm hoping to sleep well tonight, knowing we are making progress instead of playing wait-n-see. We have full confidence in the staff at Children's and we look forward to him enjoying his implant, for how ever long he has it. He will be fine. Thank you for all of your concerns, all we can do now is pray.

**post note**

It's important for everyone to remember, he's not your typical ci patient.....he ha had issues w/his Goldenhar Syndrome and ear malformations since day one...we still think it's a blessing he's hearing as well as he is...we are sad he has been through so much but had he not been born with his syndrome, he'd likely have a much easier time! We appreciate those who take care of us, year round!!