Breathing.....

Breathing. It's something I can't seem to do much of anymore. I am sitting here trying to fully grasp everything that has happened over the last 4 months and I truly cannot believe it.

This week was certainly no different. I am sure you have all heard about the "fight or flight response" at one time or another. My family is living in that constant state every day. I have been doing alot of reading about it as I know it must be detrimental....but what do you do about it? It’s important to learn how to recognize when your stress levels are out of control. The most dangerous thing about stress is how easily it can creep up on you. You get used to it. It starts to feels familiar – even normal. You don’t notice how much it’s affecting you, even as it takes a heavy toll. I am used to it, and have been for way to long. What is even scarier is that if I am feeling this way, how is Brigitte feeling? How are the other kids feeling about all of this?

I should let you know, that Brigitte was again rushed to Boston on Tuesday and underwent another emergency surgery. I had some trouble with her pump and some occlusion alarms in the early morning hours on Tuesday. Think like 2 or 3am. Yeah, makes sleeping impossible. I finally decided to shut the damn thing off because not only was I not sleeping, but Brigitte wasn't either. I flushed her line with saline and swore I heard a little "pop." WTF!!!! I checked her site, inspected the line and didn't see anything. I went back to bed. She woke around 7 and was crying a bit. At this point, you can imagine the chaos that takes place trying to get 4 kids up and ready for school. I got breakfast for the kids, got them all dressed and was ready for Brigitte. Let's just say her morning routine is a little less than pleasant. That's putting it mildly. She is a major witch in the morning, so I leave her for last. As I was attempting to get her dressed, I noticed that her dressing was red. At first I thought it looked like fleece stuck to her (she was wearing a fleece pajama set) but quickly realized that her PJ's weren't red and what I was looking at was clearly blood. Add to that, Jake and Sean both saw it at the same time and started freaking out. It took all I could to get them to hang up the phone fast enough as they had already dialed 91...and you know what would have happened next. I could see she wasn't actively bleeding so I knew that an ambulance ride would have actually wasted valuable time. In our town, they are not allowed to cross state lines, so we would have been taken to the local ED, stabalized, then transported to Boston. I knew that pop I thought I had heard was real and that we were already beyond the 4hr mark of blood starting to clot. So we needed to get to Boston fast. That's kind of funny, because it was rush hour traffic time, and Brenna was home sick. So she went with my dad and Brigitte and I made our way to the city.

It turns out that her line had totally blown and she was headed to the OR again. The surgery itself lasted about 3 hours. This time instead of a broviac CVL being placed, we went with a port. Although we aren't able to get the full benefits of it right now since she is on TPN 7 days a week, we are optimistic that at some time she will be able to have some days off and be deaccessed giving her the ability to bathe, swim...and just not be bothered. We are a long way from that, though.

So, as I said, we live in a constant state of "what's next?" It is becoming more and more difficult to just live normally. Clearly, this is affecting Brigitte more than anyone can imagine. She is having tremendous difficulty in school because of her anxiety. This poor child can't even wake up on a Tuesday and get excited about school and her friends because just when she thinks things are ok, she is in the hospital with a mask covering her face as she is forced into sleep to be cut open again, only to wake up with another scar and one more piece of plastic stuck inside her little body. One more thing to make her so unlike most little four year olds. She is being admitted again next week for all of her testing, and tonight I have had multiple email exchanges with her doctors who are also concerned about her emotional well-being. We have come to the conclusion that a psychological consult team will be part of every admission to deal with her ongoing anxiety. My poor baby is only four years old and will now have a TEAM of psych doctors. This just isn't right on so many levels.

I have to be honest and tell you that I am a very angry person right now. I am angry on so many levels. I am angry that this happens to Brigitte and Sean. I am angry that there isn't a damn thing I can do to make any of it go away. I am starting to get really mad at family and friends who don't realize that my life is nothing like theirs and they just don't get that. I dread the holidays and having to put on my happy face. It makes pretending all that much worse. I know a while back I promised a post on all the good things that are happening, but right now, I can't seem to find anything. I am taking a few days to sit here and feel bad for myself, my kids, my husband, my marriage. Next week, because it is Thanksgiving, I will pull myself up by my bootstraps and be happy for all that I do have in my life.....which I do know is alot. But right now, I just want to be mad.

For all my other mom friends who have children with special medical needs or worse, have lost your children. It's ok. It's ok to be mad, really mad.

What's not ok is to stay mad.

Updates

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 back....as 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!!!