We're home!

Sorry things have been a little more than crazy around here. We were discharged on Monday night, it almost didn't happen though. Some of Austin's IV antibiotics need to be mixed using the IV bag and needles and a bunch of other not so fun stuff, which Dr Fortuna felt was too much to be sending us home with....I assured him it would be okay. We are definitely adjusting to his new care routine. It's a lot more than last time, but we are just so happy to be home it doesn't matter. Nate is taking the rest of the week off due to "personal issues" and helping me out tremendously. I am getting more comfortable mixing the meds, and getting all the air out of the IV tubing...pretty soon I will be a nurse without a degree! Nia is thrilled Austin is home, she won't stop telling him she loves him and trying to hold his hand. We are just so happy to be home, we still have a long recovery ahead but are so very pleased how things have been working out. Thanks for all the prayers and thoughts I really think they helped us out. I will keep updating but it won't be as frequent. Thanks again!

Day 2 Post-Op

I don't want to jinx it but things are going far better than anyone could have expected. We were able to make all through the night without any fetynol which surprised everyone. Austin is doing very well with his breathing "exercises" to control his pain. Basically we've gotten him to the point that we can walk him through a panic/pain induced attack. Since we were able to make it without the fetynol they have decided to put him on loritab instead, which is something we could utilize at home unlike the fetynol. He got up in the chair for the first time today and even walked twice out into the hall...only maybe ten feet or so total but it's a start. He's in high spirits and is slowly returning to himself. I can't help but laugh because even if he is in excruciating pain, if Nate or myself act like we are going to take a picture either with a camera or a cell phone he stops crying for 2.5seconds for a cheesy grin, and then goes back to crying.

I think the goals for tomorrow are going to be to get his chest tube out and maybe a couple longer walks. He got his arterial line out today, but we have been having some fluid retention issues so we may not get the chest tube out. I am prepared for another day of it if needed. I would much rather sit for another day with it, then to have to put a new one in. This past morning he was so fluid logged he looked like he weighed forty some odd pounds. His little feet were like little sausages. They had to give him some albumen and IV lasix to help with it, and although it's working...he's still clearly holding a lot of fluid. We also seem to be struggling getting him off his oxygen. We've been trying, but he drops his O2's down into the lower 60's without it...which is not good. It's something expected, but a hurdle none the less towards going home. Myself and Nate are doing well, so far, with no major setbacks. We don't want to get our hopes up but maybe sometime mid to late next week for home. We are giving ourselves a little extra time if needed for our own sanity. The prayers and thoughts are really helping so please keep them up, and I will update again sometime tomorrow...and maybe through some pictures up. Thanks again-

First day of recovery

I wasn't very detailed yesterday so I am going to recap a little so I can better explain the progress today. While in surgery Austin had gone into v-tach several times. Thankfully he didn't require being shocked but was very close. Dr Fortuna was able to regain normal rhythm by several large doses of a drug called amirdron (something like that anyways). When we were able to see him in his room they had the defibrillator right next to his bed...not something any of us wanted to see. He was on a constant amridron drip and the doctors wanted the paddles in there "just in case". Thankfully he has had a normal heart rhythm for the last 24hrs, so they were able to remove the paddles and take him off the drip today. He hasn't had fentynol(pain narcotic) for the last four hours today which is wonderful. Our goal for tomorrow is to get the arterial line out of his groin area so we can try and at least have him sit up. I don't want to candy coat it, he is in a tremendous amount of pain but all in all we are very pleased with the results as are his doctors. We hope to start weaning him from his oxygen once he is able to move around a little more. Maybe in the next couple of days we will be able to get the chest tube out and look towards an "out date". Remarkably we are still optimistic...hopefully that will hold. Keep the prayers coming! Thanks again. Mary

Surgery

Surgery went well today. From the time we left him headed to the operating room to the time we got to see him in his room was about seven and a half hours. He is in a lot of discomfort but is doing well. They did not go in through his sternum at all, which is a positive. The negative side of it is the fact that the leads are still imbedded in his heart from the infected pacemaker. Dr Fortuna said the area around the infected generator was very "grungy" and required a lot of cleaning but he is confident he was able to clean it all up. He has a new pediatric one that you can barely see, which is amazing. He has a vaccum dressing on that he will have for approximately four to six weeks which is relatively rare to send someone home with...lucky us. He'll continue IV antibiotics for an undecided amount of time, but we are optimistic. All in all I guess he is doing as well as expected. We are all tired and relieved, but happy so far with the outcome. We'll keep you posted. Sorry this is somewhat cryptic, I am going on three hours of sleep.

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