Years 2 and 3

Brigitte's second and third year brought much of the same as the first year. She was admitted countless times for mostly respiratory infections and failure to thrive. We spent countless days heading in for clinic appointments and testing. The second and third years brought many, many diagnosis for Brigitte.

There were many more surgeries and procedures done to her little body. Her current diagnosis list is long!!

Noonan Syndrome
Mild Cerebral Palsy
Autism
Failure to Thrive
Type 1 Laryngeal Cleft
Pulmonary Stenosis
Hypertrophic Cardiomyopathy
Constipation
Hypogammaglobulinemia (supressed immune system)
Hypotonia
Lung Disease
Asthma
Gastroparesis
Small Bowel Obstruction
Poor Gastro-Motility
Global Developmenatal Delays

and the list goes on........

Her big surgeries of those two years included an attempt to repair a Type 1 laryngeal cleft, which is basically a hole in her larynx that allows food/liquids to flow into the trachea vs. the esophagus. This was to be a very complicated surgery. Brigitte had other plans. She had a laryngospasm on the OR table and the case was subsequently cancelled. We can't find a surgeon willing to touch it now....so she still has a cleft. We have learned along the way, the Brigitte does things in her own way. As much as this drives me crazy and makes for some very scary situations.....it also shows me that she is her own little hot mess!! She dances to her own beat and will never be ordinary!!

The other big surgery was another cardiac catheterization. Brigitte still gets very tired easily. Her lips turn blue and she sometimes has trouble breathing. Add in to that the inability to gain any weight, and it was time for another cath. It's funny when you get to a point where it's "just a cath", no big deal!! She did well for the procedure, had a little trouble with anesthesia and regulating her temperature, but otherwise did ok. We did get some very alarming news afterwards. Brigitte is now missing her entire right coronary artery and all the vasculature that goes with it. The theory is that she must have had a stroke at some point and the artery clotted off. Her left side has made up for the right but this puts increased pressure on her heart.

The problem with having alot of problems is they all make the body work a bit harder, which in turn means the body burns more calories than it should. Brigitte also has ADD so she is on the go non-stop! For those of you who know her, you know what I mean. She does not stop talking all day long! The decision was finally made after multiple hospitalizations and the lack of really good answers or solutions to place a central line in Brigitte and start TPN nutrition. She got her first line in September of 2009. In six weeks, Brigitte gained almost 2 kilos (almost 4 pounds). It was our miracle. Then the first line infection hit. She was a sick little girl and we spent another 14 days inpatient trying to clear infections from her line. It didn't work, and she was emergently sent to the OR to have the line removed. She lost all the weight we worked so hard for and was worse off than when we began. We came home for a few weeks, and then went back in December to have a second CVL placed. This time she came home on TPN 4 days a week and 3 days of IV hydration. The next line infection struck in February. This time it landed her in ICU. She was septic and not responding to antibiotics to treat the line infection. Another emergent trip to the OR to have the line removed. No more lines for Brigitte. She is immunodeficient, so bacteria just proliferates in her system once it gets there.

All of this back and forth is difficult on everyone. If you go on medical message boards people often refer to their healthy kids as UA (unaffected). This is so far from the truth and it is one thing that gets my blood boiling. My other three children are anything but unaffected. They may not go through the physical pain that Brigitte (and now Sean) go through, but the emotional toll is just as devastating...if not more so. There are many days that I feel as if I am sacrificing the lives of 3 other children to save the life of one. Brigitte has spent 373 nights at Children's Hospital Boston. She is only 4 years old. That means I have not been with my other 3 children for 373 days. Thats alot to miss out on. For me and for them. I don't doubt that I am doing what I have to do for Brigitte. I am not strong. I am not brave. There is no choice. She is my daughter. End of story. Having said that, each and every time Brigitte is sick, I leave three kids home without their mom. My kids ask me everyday "Mom, your going to get us off the bus, right?" Everyday I answer "Yes." BUT....there have been so many days, when that just isn't true. They come home and someone is getting them off the bus and they will spend days sleeping over someones house, or having multiple people stay overnight with them here at home. Not only that, but last year was almost unbearable. Hospitals had severely restricted their visiting policy to parents/guardians and grandparents ONLY!! No children under 18 were allowed in due to H1N1. My kids get extremely nervous when they can't see Brigitte. In their mind if they see her and she is on the floor not the unit, then they know she is sick, but she'll be fixed and will come home. When they can't see her for themselves, all hell breaks loose. They really suffer. Tremendously. My kids know what all of her diagnosis mean. They know how to flush a gtube and give her meds. The biggest thing they know is compassion. There has been so much good that has come from Brigitte and her life. It makes my heart smile everytime I see my kids showing empathy and understanding to children with special needs. So with the bad, there certainly comes alot of good.

I hope that this little history lesson has given you some insight into why we fight so hard "Saving Brigitte." I do have to add that these are just some of the highlights. She has so many other issues, has had so many other surgeries. If I tried to list them all, you would be reading FOREVER. I think you get the point. Yes, of course we have suffered alot of heartache. She has endured more than most. My next post will be of all she has accomplished. Thats quite a list as well considering half her doctors told us she isn't going to live....and the other half tell us "She won't do this, she won't do that".....and she has, and she will!!!