Thursday, November 4, 2010


Well, things certainly have been busy around here. I honestly don't have the time or energy for a real heartfelt blog entry....but I know I owe all of you an update on how the kids are doing!!!

Sean ROCKED his surgery. I mean, truly ROCKED it!! I am beaming as I sit here and write it because I am still amazed at how amazingly strong he is. His surgery was about 4 hours long. He had a very difficult time going to sleep and really fought it. His surgeon got inside the dura and his cerebellum "popped" right up into place. He said that his post-op MRI was very deceiving for how much crowding was actually there and he definitely needed this second operation. Having known that Valium was Sean's magic drug post-op the first go-around.....we got the PACU nurses to give it to him right off the bat. We knew he was feeling pretty good when he said "Hey, is that thing (catheter) stuck in my balls again so I don't have to get up to pee?" Sean was funny as ever!!! For those of you who don't know Sean personally, he is a boy of few words, but when he does speak, he usually leaves you shaking your head, laughing!! He was also started on Decadron in the OR and continued it for a week total. This helps with brain swelling and also with the junk that was in his lungs prior to surgery. He was eating and drinking immediately after surgery and had a great nights sleep. Saturday morning he was up and out of bed and already taking oral pain meds. We gave him the morning to see if he continued to do well and when his surgeon, Dr. Benjamin Warf, came in to check on him I asked if we could go home. There wasn't anything I couldn't do for him at home and lets just say that things with Brigitte were becoming a little more complicated and being home was best for everyone. Sean was discharged less than 24hrs after brain surgery and never took a dose of pain meds after leaving the hospital. He is AMAZING!!!!! He rested on Sunday and on Monday morning I had to make him come back in the house and sit on the couch. No hitting wiffle balls two days after brain surgery!!! Geeeshhh!

And then there is Brigitte. I will just say that if you looked at her today, you would say she looks probably the best she ever has. I had a doctor ask me today if she was healthy? My response; "Well, if you consider a 4yr old that is life dependant on TPN nutrition 7 days a week, has a heart defect, is immunodeficient, is in complete colonic shut down, and so on, healthy, than yes, she is healthy." It saddens me that I can honestly agree that she looks the best she has in months. It saddens me that it is a central line, TPN, and IV hydration that is keeping her alive. I think people don't get that. They see a little girl running around, yelling, playing as best she can, going to school and her brothers football games and they think "Wow, she is doing so awesome." Until you understand that if we take away the central line, the TPN, and the hydration....give her a few days and she would die from dehydration and malnutrition. So, yes, Brigitte is doing ok.

She is being admitted the week before Thanksgiving to have her manometry testing done. This will be a very difficult admission for her. We are hoping for only 3 days, but it could turn into a few days longer. She will go to the OR to have a colonoscopy, endoscopy, have probes placed in her rectum and in her gtube stoma.....she will also likely have an NG tube dropped from her nose into her stomach. She will then be attached to monitors to see what her intestinal motility looks like. She has to stay in bed while this is done, and no she cannot be sedated. Good Times. Feel free to visit and serve as a distraction. The thousands of stickers we have should come in handy, but I very well may lose my mind!!!! This testing will give us an idea of what surgical procedure may need to be done. She is still only having bowel movements every 12-14 days despite being on mega-doses of laxatives. Yes, she is still smiling!!!

So, those are the latest and greatest!! I have lots of pictures to show you of Sean, but we have been straight out and just haven't had the time to do much of anything else but auto pilot. We're getting there.

I have been thinking about another post to write soon, but I know I have alot of people reading thanks to the Thrive Blog post I did with Children's Hospital. What would you guys like to hear about?? Leave me some comments and I will try to come up with something good. I was thinking of "How to deal with family through the Holidays?" Let me know what you think!

Much Love Always!!!

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