Here we go...

I decided to start a new page in order to keep friends and family updated on Austin and our family in general. We are headed to Peoria later today for all of Austin's pre-surgery tests. He needs a chest x-ray, lab work, a clean dressing on his PICC line, and another EKG to make sure everything is in order. Plus Dr Fortuna wants to see him again prior to surgery just to check him out. We have to be at the hospital by 6:00am on Wednesday for surgery around 8:00am. At Dr Fortuna's best guess, he said we are looking at a procedure of at least three to four hours but probably a little longer. During the surgery they are planning on going through his lower left ribs, and placing a new pediatric generator in his upper left shoulder region. Once that is done they will be placing new leads on the heart. It is unclear if they will have to open his sternum up for that yet, hopefully not. Once the new generator is connected and functioning, he will open up Austin's abdomen and remove the infected generator and leads (again we are unsure if his sternum will need to be re-opened for this...). Once the generator is removed, to the best of my understanding, Dr Fortuna will clean up any infected tissue, cartilage, and bone. No one is clear how infected the area is, so it is truly unknown what we are getting in to. Best case scenario, Dr Fortuna said we are looking at a week in the hospital at least...probably closer to two to three. Although, Austin has gained close to five pounds in the last four weeks, so with the added nutrition maybe he'll finally sail through a surgery. Our fingers are crossed.

As far as how we are holding up, well we are doing the best we can. This has been a very stressful and trying time for us. I guess we should be used to it, but every time it gets harder and harder. Austin's behavior has been well...less than stellar. He knows what is coming and is not happy about it. His summer is gone as usual, we made it to the pool once. He's tired of the poking and prodding, and certainly tired of the pain. Nia knows something is going on, she has become very attached to Austin always wanting to be with him, kissing, hugging, and holding hands. Nate and I are at our wits end. Although people at work have been amazing, generous, thoughtful, and well wonderful, we still stress about what is to come. It is so hard to sit and watch your child suffer over and over again. I know it appears to others that we take things in stride, and we do the best that we can, but both of us are struggling with this. I am worried about my job and insurance, not so much fiances thanks to all of the wonderful people we know. Now we found out since Nate and I both work for the state anytime he calls in sick family they dock it from my FMLA time. I only have 40 days left until November that I can use as FMLA, then I have to worry about LOA's and keeping my job. Personnel is great and assured me not to worry about it, but I do and so does Nate. Now he's trying to figure out if he should call in all this time, and I need him too. I can't do this alone, and I need and want him there with me. He wants to be there, so that is just one more thing to worry about. Not to mention what we will do if the close Pontiac. That's neither here nor there. Anyways, I will do my best to keep daily updates posted. Please keep us in your thoughts and prayers and thanks for every one's help, generosity, prayers, and in general for being there for us. Thanks again-
Mary