Where we are...

So, last night his head was itching severely before bed...I had a hard time falling asleep. I had hoped and felt sure, we would not see ANY signs of his returning infection but apparently...I can be wrong. We will keep him on the meds for now and if this continues, or if the swelling returns, or pain/tenderness returns, we will go ahead and schedule his removal. That's it, REMOVAL...notice I don't say revision or removal with intent to replace. Removal.

I have a fabulous nine year old boy who has been too many times to the O.R. in the last couple of years due to 'issues'. At this point, it is compromising his health, and hearing isn't worth this. So our fabulous doctor, surgeon, friend, called us today and gave us the news we kinda already knew. He's spoken with doctors all over the country and apparently, once a patient gets one of these rare staph infections, even with removal of infected device (various implants, pace makers, etc) the infection can hide out, hang around in soft tissue causing no problems then BAM, surface again once another foreign body is inserted. It seems like this might just continue to repeat itself so it'll have to find elsewhere to do so, not my child's head. I had already decided we would not re-implant should we need to remove this one-doctor agrees this is best-but he'll leave the array in for possible future reimplanting should he go years w/no problems and want to try it again. As for why it happened in the first place? Maybe his anomalies and birth defects have something to do with it, maybe not. No one is for certain why it happened to begin with. But here's what my child said when I repeated to him what his doctor said....

As he realizes it just doesn't seem fair..."So why can Brook hear better than me?" I know he really wants to know why everything happens to him, and she slides by with no problems. I respond, "Well, when your last implant quit working, it had nothing to do with your syndrome or you at all, it just quit working right. The infection may have developed because of your ears, I don't know, no one knows why it happened. But apparently it'll keep happening if it comes back after all this medicine. If this medicine don't work, we need to take it out! It's not worth keeping for you to keep having to take so much medicine and it's not worth keeping if you have to get it replaced every year. Enough is enough. You other implant is fine for now and you'll still be able to hear a little bit with that one. But Dr. W will take care of you and we want you to be safe and healthy so that's why you need to keep taking the medicine for now, but at any time it hurts you or you feel like the itching is too bad, we'll go ahead and remove it." And all he can do is shake his head in agreement and say "Okay. Brook let's go outside and play football."

...and that my friends, is where we are.

No news is well, no news

I hate to say no news is good news, because I honestly doubt we'll have any issues while he's on all these meds. But...there is good news that he has no pain, no swelling, no itching...nothing. We are optimistic but I tend to live in reality as well...we know what happens when the meds are finished in 5 1/2 weeks...we go in the wait-n-see-what happens mode. Everyone is fully aware that he could simply wake one morning with issues again, if that happens, I plan to take him straight to his doctor where we'll likely be scheduling a removal. I can not have his health compromised. And yes, Gage is fully aware of everything, he is not having issues with his recent re-implant (that had a failure) so we expect he will keep it as long as the Lord allows. He enjoys hearing, but it's not his EVERYTHING. His everything is building trucks, building cars, taking things apart and keeping busy...we continue to count our blessings...

**post note** before bed-itching BAD...I'm hoping the pinkness I see is just from him scratching...will have to examine again in the morning.....again, the itching is not allergies, is not shampoo, this is like a dog w/fleas type itching that is just around the one ci....

We have audiology on Friday, and tomorrow...my seven year old has her check up...she is not looking forward to it, afraid she'll receive shots!

...and I forgot to mention

...I forgot to mention, some people had hoped no news was good news on Gage over the last couple of weeks...
We were 8 days off of meds when he woke w/some ci pain yesterday, but earlier in the week, we had itching. I've been keeping a close eye on this all week since he began itching on that side again...like 3 days before. This was another symptom of his infection, I switched shampoos using a very gentle baby type-and I washed it myself (we know 9 year old boys!)-just to rule out a common itchy scalp...it just so happened to be on that same side and no where else...

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!!

Last Day...

We are driving each up a wall and slowly going insane snowed in here and will be until Friday it seems. But, today is Gage's last day of meds...so we shall see what happens over the weekend (if anything). Last time (before we knew what type of meds he for sure needed, trying various antibiotics) the symptoms would always return w/in a couple of weeks. We have faith that if they do return, we are under the best of care and will do what is necessary to keep him healthy...bottom line. He is a big boy, he knows exactly what is happening at all times...and he knows we now are considering a back-up plan for their education. He, being older, isn't too thrilled about it, while Brook could not be more excited and ready to go now, even though she loves her school and teacher where she is, she just doesn't get as attached as he does. I have to consider all our options since he has proven year after year he is going to always be a 'medical' child, bless him...he would do fantastic in his school up until he reached grade 7, where he would transfer to the high school. I just don't feel like it would be a good match for him, or even her, no offense, but they both are very smart, bored easily, and I just think both of my kids might find 'other things' eventually over there to keep them entertained (when they are bored or can't hear well) instead of school work. So we shall make whatever arrangements necessarily to ensure their little straight A and A/B brains are fully entertained, with good stuff.

...and it's snowing here again (lightly)

...and three days later

Right now, we are gathering our emergency supplies-water, candles, etc. in preparation for the winter ice/snow storm headed our way this afternoon...
So if I go 'missing' for a couple of days, we could be w/out internet/power/water, you know the essentials.

As far as Gage goes, I have very high hopes that the meds will work. Right now they have 'removed' all symptoms. No tenderness, no itching, no puffiness, no pinkness...GREAT.
As I told him this morning, it makes me hopeful that IF the symptoms return (we have 4 days worth of meds left) I feel confident the PIC line/IV meds could work if we acted fast enough. Problem is acting fast enough...as bad as it sounds, lets just hope that if we have issues in a few days/weeks, that there will be 'enough' evidence, I'd rather this 'bad guy' present itself ENOUGH so the doctor can see something...I know the last thing we want to do is treat him w/iv's unnecessarily!! That would be horrible. But my gut feeling, my mom's intuition, God's pre-warning, and the fact that Gage knows his own body and can give us great and detailed information...is preparing us for that 'worse case scenerio'....and I won't even go there yet...but we do have a back-up plan which would open a whole new and different world for the kids......to be continued.

Today's medical update...

I was thrilled the pink area seemed to be gone yesterday but still asked him not to wear the processor. However, this morning I did see a tiny magnet-sized pink spot again, so he'll be wearing his processor only a little while this morning again, and removing it. I did however, manage to get his FM loop working so his teacher is using that today. Unfortunately, I did have to give him benadryl last night before bed due to itching. He says it still feels a little puffy to him and given that it is his body, I must take note of that even if I don't really see much. But so far so good on the meds, we still have high hopes!! Again, not much to see in the photo.

And today...

So...he still had a small amount of redness to the magnet area today, so the school nurse and I decided he should only wear both processors half the day, and remove the one having issues after lunch. It was tender to the touch this morning but I did change the magnet to a 1/2 (weakest one) so I felt okay about him using it only a few hours. He is w/out this this afternoon as precaution but REDNESS IS GONE!!

So far so good on his meds! I had trouble setting up his FM today, I was doing something wrong. He has a fabulous teacher so leaving him "impaired" is not what I want to do, but I am perfectly comfortable they'll all take care of him. He is great hands at school! Thought about it while I was at work today and realized what I was doing wrong, when he got home, it worked...first try!! So tomorrow he'll be using his new neck loop and unless things change overnight, he'll be bilateral.

Day by Day...

Hide-n-Go Seek

Hide-n-go seek has become my least favorite game, now that we are back to describing Gage's symptoms this way. It's hard to tell from a picture what we saw/felt yesterday but I've done my best. This is EXACTLY how it all began in August of '08 when it actually took a couple of months before anything was visible at the doc's office.

As I expected, when I took him in today, all I could do was tell him what is going on, the itching (an internal itch you just can't scratch enough) the warmth on that side and the puffiness-none of which were there today. Only the small red spot on his magnet area when the puffiness caused his processor magnet to need adjusting (which Gage did-I knew nothing about 'til it was too late and already pink)...But hopefully as the doc said, these meds will 'fix' the problem, we'll see how he does after the 10 days of antibiotic, if we have recurrent problems or have something visible, we'll likely have to go to IV-pic line again. This would mean a lot of changes, mainly no more subbing for me (he'd be home bound again) but luckily I still have the accountant's office which I could still do since hubs is home until noon (I am part time) so that would not be affected very much. We are back playing the unwanted game of hide-n-seek for a couple of weeks. Cross your fingers that 10 days will be all he needs!

I've color coded the descriptions, the thin black lines is where his actual implant lies. You can click to make it larger, but not a lot to see, I know. In fact, I would have noticed nothing had he not awakened with, "Mama! My head was itching soooo bad last night! Look and see if you see anything, it feels BIG right there!" And of course this set off all kinds of panic alarms. Here is what the last infection looked like 3 mos after this all started, so you see how slooooow these symptoms progressed, it's very tricky!

We do not want this again!