Tuesday, May 10, 2011

Yes, we're still alive

It's always difficult to get back into updating when I go so long between posts. There's been more going on in the past month and a half than I could have ever imagined. I can't possibly recap it all adequately, but I will try. I guess by just focusing on the most important.

First off, if you read my last entry, you know we were faced with incision complications. We aren't 100% what caused it to flare up and become such a nasty ordeal, but we suspect (along with neurosurgeon) it began with Austin scratching the incision. We'd thought we were out of the woods as far as complications and infections. The incision seemed to be healing beautifully. With that said, it is STILL an issue. So much that we're in communication with neurosurgeon's nurse practitioner nearly everyday, have seen them twice in the last month, have been prescribed five different antibiotics, and are faced with the possibility that he will have to have surgery to get it corrected and check for bone infection. There is a positive side here though. We saw neurosurgeon last Tuesday and decided since it was actually looking much better, we would wait a week after trying a different antibiotic to give it one last shot to heal on its own. I've been having to do wet-to-dry dressings (because of drainage) for a month now and it seems to have helped. One of the wounds (he had two side by side) is completely healed. I'm relieved to say the other has finally started to catch up. We are at the deadline he set for it to stop draining and scab over. He's still concerned, and we will have to see what happens in the next couple days. Hopefully, no surgery will be necessary (although he said it would be a quick five minute procedure).

You'll notice in the photos, there is one showing Austin's antibiotic (Bactrim) related rash. He was on that one for 8 days before it appeared. Serum sickness was suspected so then it was on to a different antibiotic. Nurse practitioner prescribed Cefdinir, the exact one I told her I wouldn't give him due to severe diarrhea and possible link to bacteria infection, clostridium difficile. Oh, and naturally this all occurred on a Saturday. I bought it, saw it, and immediately drove right back through the drive through and told the pharmacist we weren't going to use it. Finally, by that Monday, we got the Augmentin -which he actually finished his 10 day course. Wound still wasn't healed. Last Tuesday, after appointment with surgeon, he chose to put him on one more antibiotic and then surgery if no success. By Friday, we were demanding yet another antibiotic. He prescribed liquid suspension clindamycin. I have never in my life smelled a med so foul and tasted one so awful. That wasn't even the worst part...our instructions were to give 5 mls (that's quite a bit at a time to stomach for Austin), 4 times a day, for 21 days. I found out very quickly that giving it to him straight was not an option. The gag shivers were enough. And that was a pediatric solution! They really must be out of their minds to think a kid can tolerate such amounts for long periods of time. I even tried disguising the taste in applesauce (which has ALWAYS worked) to no avail. So, we finally got a new one yesterday. A capsule. So far no adverse reactions and no problems getting it down the hatch. Fingers crossed.

Amidst all of that, we had concerning post op MRI, medical records and discs to round up for Dr. Chugani, major seizure improvement declining, and the most profound personal conflict I've ever encountered to manage. Oh, and I didn't mention the grueling application process for our state's medically dependent children's program (MDCP). Assessments, forms to fill out, info to fax, info to collect, overnight nursing home visit, etc etc. We're finally done after two months of that. Just waiting to get final papers in the mail and finalize with the home health agency for our respite services. I'm lucky to have been able to choose the person coming in, and I chose a dear friend of mine that I know loves Austin. It may only be temporary depending on other obligations may they arise for her, but it will get us started anyway. I can't even imagine how much lighter my burden will be once I get someone in here to play and help with Austin while I get things done around here. It's no easy task to care for a special needs child while doing everything I need to do. There are always sacrifices. But, maybe this way, I will feel confident Austin is getting all the attention he deserves while having a fairly clean house at the same time! ;)

By the way, I did hear back from Dr. Chugani's nurse since sending imaging discs and records. He wants us to come up for some tests because he thinks there's a possible option for more surgery. Just to clarify...WE ARE NOT READY FOR MORE BRAIN SURGERY RIGHT NOW! It's very possible we will go soon, but only because we owe it to Austin to investigate every available option for him. After our local hospital took 8 months to evaluate and perform an unsuccessful surgery, I thought it was best to get the ball rolling and look into it, so that IF we are EVER ready to go down that road again, we will already know. He's still healing. We are still healing. I wanted to find out now instead of waiting until we're all ready to go through this again and the evaluation process possibly taking months. I'm still waiting to hear back about what he is seeing that's making him think surgery is a possible option. I definitely want to know that before we even decide whether or not we will go for more testing.

I was so eager to start the new year back in December. Had I known it would be THE most difficult and trying year of my life, I would have kept my mouth shut!! And it's only May!




Neurosurgeon had to shave part of his head again. Poor kid, don't know if his hair will ever be even again!










Waiting for OT. He was in the best mood...until therapy started of course!






















Nasty rash from antibiotics.












4 comments:

devon said...

I was just thinking about you guys! Hope Austin continues to heal! I am so glad you guys are accessing MDCP services. You need a break and Austin, I'm sure, will love having a new playmate! Continuing to pray for you guys!!

Sophie's Story by Elaine said...

HUGS!!!

We had issues with Sophie scratching post-op also. During the day I could keep an eye on it. But at night, she would pick on it while she slept. So I would wrap her head up with gauze like they do during EEGs every single night before she went to bed. It FINALLY healed. Though I can't remember how long it took.

JSmith5780 said...

Hope the healing continues and life gets a little easier for you all soon.

happy's mommy said...

Oh sweetie...

Sheesh.

But I do believe when it comes to surgery...Dr. C is always a good choice.

BTW...Bactrim is a Sulfa(sulfer) based drug (which you probably already know). I would assume that that he had an allergic reaction to the sulfa...which can be VERY serious. Toby had a sulfa reaction when were living in The Bush. I was SO ignorant back then. When I think about it NOW I can't believe we stayed in Tanzania at all! :)

Anyway...I think you need some clarity on the reaction. His rash looked REALLY NASTY. And pictures never capture the whole deal...so I'm sure it was worse in person.

Love you, hon.

...danielle