Sunday, September 7, 2014

Busy, Busy, Busy

It has been a while since I have updated about Brody. I guess that is mostly a good thing because it means he is doing so well. These last two months have been crazy busy for all of us. At the end of July, Brody had to have a minor surgical procedure done. One of his "marbles" did not drop so we had to go in and get it put in its place. (No, it doesn't seem Brody can catch a break ;) )We arrived at TCH early that morning and got him all checked in. We met with the anesthesiologist right before they took him back and she was very familiar with Brody. His cardiology team wanted him to have a cardiovascular anesthesiologist and the doctor we got was the anesthesiologist for his first open heart surgery at 4 days old. I remember her very vividly. I remembered as they started to push his bed down the hall she paused right outside the OR doors so that I could give him one last squeeze. I had already started crying and I know I had fear painted all over my face. She assured me she would take good care of him as if he was her own. I guess you don't forget the face of the person who takes your baby back for open heart surgery. Anyways, she reviewed his file and remembered him and the tough recovery road he had. She decided that she wanted Brody to spend one night in the hospital after the procedure just as a precaution since Brody has never been an "in and out" kinda kid. I laughed because that was so true and I already had a bag packed and waiting in the car as a realistic "just in case." The surgery only took about an hour and a half and everything went well. When we got to go see him in the recovery area afterwards he was not happy. I can't say that I blame him though. He was very cranky and irritable. Trey was finally able to hold him and get him to calm down some. He was gagging quite a bit which told me he was intubated during the surgery. We spent the entire afternoon in recovery waiting for a room on the old stomping grounds of the 15th floor. The recovery area we were in closed around 5 so they moved us to the hospital recovery area while we waited. Finally, that evening they had a room and we were ready to go. The nurse called the receiving nurse on the 15th floor to give report. When she heard his name, the nurse said, " Oh I know Brody! You don't have to go through his whole history." The nurse came back and told us that and I just laughed and told her, "Ya we spent quite a bit of time up there. Everyone knows Brody." When we got to the 15th floor, Brody was really, really mad. We got them to order him some pain meds, but it seemed to take them forever to get there and he was just screaming and couldn't get comfortable. Once he got his meds, he passed out and slept the rest of the night. I on the other hand, did not get much sleep. I was back to sleeping on the uncomfortable couch and dealing with nurses in and out and lights and sounds in the room and hall. I think I maybe slept a handful of hours. The next morning, the urology team came by at like 5 am threw the lights on and wanted to check on the incision. They need to work on their approach a little. The cardiology doctor came by later that morning and gave us the green light for discharge and we just had to wait on the paperwork to go through. While we waited, I took Brody for a little walk around the floor to see if any of the nurses we had the last time were there and we saw several of our old "friends." Everyone was surprised he was there, but were relieved when I told them we weren't there for anything heart related and we were already leaving. It's very bitter sweet to run into all these nurses and doctors that remember Brody. It's bitter because I wish the circumstances for how they knew him were different and it's sweet because I love that they remember him and care about him. Well the paperwork literally took all day and we were released just in time for the afternoon traffic. I didn't care though. I was just happy we were going home.

Brody recovered nicely. After that week, we resumed all of his therapies and life was back to our normal. In August, I officially went back to work. For the first week, I had my family take turns taking days off work to watch him. His baby sitter still had all of her summer kids all day and I didn't think it would be fair to her or Brody to start that week with adjusting to each other and his feeding tube. The following week Brody started going to the sitter's house and it went extremely well. Brody adjusted great. It was like he had been doing this all along. It is such a peace of mind to see how well he is doing with her and how much he is already loved.

This month is crazy with appointments and visits for Brody. A lot of these appointments I had to book before I ever knew I was going back to work, but once this month is over, his appointments will be able to fall on school holidays for the most part. I feel like Brody is being followed by almost every department within the hospital. We had an ultrasound done in July to check his spleen. They are still trying to figure out what could be the cause of his immune system issues and thought it could be caused by the spleen. Well it looked good and there were no issues there, but the abdominal ultrasound found calcifications (stones) in his left kidney and liver. The dr I spoke too didn't seem overly concerned, but said urology would continue to follow him for the kidney and GI would follow him for the liver. I already had a surgery follow up scheduled for September with Urology, so we will see what they have to say about it then. I am working on scheduling the GI appointment and will hopefully be able to do that over the Thanksgiving break.

I'm sure I have missed some other things that have happened these last two months, but overall Brody is doing great. I feel that he is growing stronger and advancing every day. We are all adjusting well so far to the changes that have come along with me returning to work. I am looking forward to appointments hopefully calming down over the next month, but until then, I will continue the marathon called life.


Brody's 1 year photos, courtesy of Eye Candy by Candace




Quick, act like you're sleeping

O-H-I-O

Go Texans!

He's thinking about it...


Dressed like Paw Paw



 



                                                           Big boy car seat

Football with Dad