Wednesday, June 29, 2011

Seriously????

What an interesting few weeks it has been. The one thing I keep finding myself saying is "Seriously?" Really, sometimes I can't even believe the things that happen in our everyday. I don't think I would even believe it if I weren't living it. The thing about all of it is that I don't know whether I really am going crazy or not, because all I can do is laugh. I can't cry. No more tears I guess. Not complaining, because I KNOW there will come a day when I really can look back on all of this and say "COMPLETELY UNBELIEVEABLE" and realize that at the same time it was making me, the kids and Bryan.....who we are today. Sometimes though, there is just a small piece of me who wishes that we weren't given all of these tests to pass. Give someone else a chance...but I know there are reasons behind them and so far we continue to make the best of every situation and chalk it up to just another day in paradise.

Brigitte has had a very, very tough few weeks. She literally is in a psychological crisis, most likely induced by pain and medical trauma. You are right in reading that my four year old (almost 5!!!) has really been driven crazy. She is on more meds than I can list and none of it seems to be helping. She has become combative to herself and others and until two nights ago, was running on less than a few hours of sleep a night. She was admitted to the hospital for a few surgical procedures, specifically switching her Gtube to a GJ tube. What was supposed to only be an hour under anesthesia turned into four hours and when she finally came to, she was a child we had never seen before. Completely delerious. Thankfully, we are finally picking up on what is really helping, and its pain medication. The poor little thing has been in so much pain, it literally made her crazy.

We came home from the hospital on Sunday night.....only to return on Monday night. Not with Brigitte, but with Sean. Again. Remember the pattern??

Sean decided to take a header off his scooter. I took him to the local urgent care because he needed stitches to his forehead.....also turns out he broke his hand.....and while we were at it, decided to have a spinal fluid leak from his ears. So off to Children's we went. THANKFULLY, the leak stopped. He got 6 stitches and orders to come back on Wednesday to see the hand surgeon since the swelling was so bad they couldn't cast him. Today it was a bit better. He does have a displaced fracture, but the doctor is optimistic it will heal nicely. Got himself a fancy cast....and back again in 3 weeks for more x-rays!

Saturday, June 18, 2011

Exciting Fundraising News!!!

As many of you know, Brenna is an all-star cheerleader at East Celebrity Elite in Tewksbury, MA. This is her second season there.

At the end of the season last year, we got to know a few people in the gym as well as a couple of the owners. I was asked if they could do a fundraiser for our family. One of the great things about this gym is they teach the athletes that life isn't all about cheering! They are taught to become good people on and off the mat. They are constantly reminded that they are very lucky to be a part of such an expensive and time consuming sport and that there are plenty of children who aren't able to do what they do for one reason or another. Last year they held a "tumble-a-thon" for another little girl who became an amputee due to a rare bacteria. ECE was able to raise over $13,000 to help defray medical costs and to contribute to and extreme home makeover making her house handicapped accessible. This year, they have chosen us.

First off, I was completely overwhelmed, and again very humbled that people actually care enough about our family and genuinely want to help. As you can imagine, I am sure, after reading some of the more recent blog entries, is that things are again becoming increasingly difficult for Brigitte and therefore financially for our family.

A tentative date of August 12, has been set as a Stunt-Fest at East Celebrity Elite! It really sounds like a lot of fun! I am so grateful to all of the parents, cheerleaders, coaches and owners for helping us with this!

Brigitte LOVES, LOVES, LOVES to be outside! A kind gentleman, Eric Buck, from Pollock Land Planning has donated his services to plan a new deck and patio for us. As many of you who have been following the blog for a while may remember, a year ago Brigitte got a nasty infection in her central line that came from a bug that only is found in the dirt. We have no idea how she got this, but now have to be very careful about where she plays. We are hoping that we can somehow incorporate an outdoor play area next to this so that she can go outside and enjoy the fresh air. Pollock Land Design has almost everything donated for labor, but has struggled with getting decking materials. We are working with Santosuosso/Applewood Construction to get some decking material at cost and we will be using the funds from the Stunt-Fest to help pay for this, as well as helping to defray costs associated with our constant trips to Boston.

I cannot emphasize enough how generous people have been to our family. I would strongly encourage anyone who needs construction work to utilize the services of Santosuosso/Applewood Construction or if you are in need of a great landscape designer, please call Eric at Pollock Land Planning.


Our other fundraiser is "Saving Brigitte Bracelets!!" They are pink and we have two versions of them. They are being sold for $5.00. If you would like to purchase one, please send a self-addressed, stamped envelope to me! Shannon Kaiser 1 Chestnut Hill Drive Londonderry, NH 03053 I will ship them right out to you! Or you can also purchase one at East Celebrity Elite in Tewksbury!

On a medical note, Brigitte is being admitted to Children's Hospital Boston on Friday, June 24. She is going to have an endoscopy, laryngoscopy and a bronchoscopy done. Her voice has become excessively hoarse over the last few months and is slowly getting worse. We aren't sure if there is a "problem" going on in there or if it is muscle deterioration. She is also going to have some botox put in her pylorus to see if her stomach can empty a bit faster, as well as have her GTube switched over to a GJ tube. We are hoping that we may be able to get her to tolerate feeds better by bypassing her stomach and putting the formula directly into her intestine. This is going to be a very long procedure and the last time we tried it, it didn't go very well so we could really use your thoughts and prayers for this to be successful and that she tolerates the anesthesia well.

I will continue to keep you posted! In the meantime, enjoy this wonderful weekend. Happy Father's Day to all the dads out there....especially, mine! Dad, I love you!!

Friday, June 3, 2011

Newest Update......

Hi Everyone,

I am writing this update so I can apologize upfront if I am a little distant. I am taking some time to just "feel badly" and am hoping to get back to another new normal soon. I am also not writing this for anyones sympathy. As I stated when I started this blog, it is for me. It is a document for Brigitte to see when she is older, but also as an outlet.

Over the last few months, it has become apparent that Brigitte's condition has been slowly deteriorating in certain areas. When we went back inpatient in April to have the line placement it was the beginning of a new reality for us. While we were there, the Director of Metabolics approached us, along with Brigitte's Cardiovascular Geneticist. They wanted to do a "team" consult on Brigitte and talk to us about a few things. This talk turned into 3 hours of bedside conversation. Intense bedside conversation. It ended with a slew of blood and urine being taken from our sweet girl and an apology. "We're really sorry, but we are going to take care of her as best we can."

Over the last few weeks, new information has been trickling in. We have also had some new symptoms starting. Some that make us very uncomfortable, others just a subtle warning that things are changing.

We had two big appointments this week. One was a follow up with metabolics to go over more information and to report results of the lab work that has come back. The other was a multi-disciplanary (all her specialists) care conference called for by her hospital, not by my husband and I. Instant red flag. When the team wants to talk to you, you know something is up.

I will cut to the chase. Brigitte is finally being diagnosed with Mitochondrial Disease. We are not sure whether this is a primary mito or a secondary (the result of something else). We have been asked permission for two prominent doctors to write a proposal for full genome sequencing to be done. This alone is over $300,000 and has to be approved by the hospital. Only certain centers across the country do it and it can take years. There are over 300 billion pieces of DNA that need to be looked at. The doctors feel that she likely has two genetic defects and that the combination of the two are causing her mitochondria to malfunction. We have only identified the first. What does this mean?? It basically means that Bizzy's DNA is a train-wreck that is screwed up at a cellular level which in turn causes problems in every organ system in her body.

What do you do? What happens? There are no easy answers to any of these questions. The first thing we are doing is slowly starting her on a "mito cocktail." This is a combination of vitamins and enzymes that help the body make energy. There are usually 12 different medications that make up the cocktail. We have opted to start one at a time so we can be sure what caused the problem if her body were to have a reaction to something. It will be a long process. There is no cure for Mito, but this can help.....and vitamins and enzymes can't hurt, so we are game! After that, we are just treating symptoms as best we can. We are going to have the PACT team take a more active role in her care. This is not hospice. It is a team of people that will help us make decisions that best fit a quality of life aspect versus a quantity of life. Brigitte is still a full code and by no means says we are giving up. Just the opposite. When you hear from a room full of doctors; all who have their head down and have a hard time looking you in the eye, tell you your child has a progressive disease it is scary as hell. But, if you know me, you know I don't quit or give up that easily. I should have gone to law school, not my husband because I like to fight like hell. Which is just what I am going to do for Brig. It's funny, as I am writing this my email is going crazy with messages from her team. I am thankful that over the last few years I may have been labeled as "that mother," but it has been apparent over the last two months that this isn't a bad thing. I am a well respected part of her team and her doctors value my input. We have a few here and there that don't prescribe to our "plan" but we are weeding them out when we have good people to replace them with. I would also be remiss if I didn't acknowledge the "team" I have put together at home too. I have family. Some so amazing I wonder how I got so lucky to have them in my life, others not so much....that drop everything and do what I need. They know who they are. They know why I can't name them by name for the backlash from those who I don't name will be far harder to deal with than hearing "your daughter is dying." Fuck the rest of them who only seem to want to "deal" with us when we are in the hospital. I have an amazing friend, who's daughter died last year, but she is so fantastic that she doesn't let me do ANY of this by myself despite her own hell she lives every single day. She has guided me when I am right and has no problem telling me when I am wrong. Karen, you rock! I have an amazing nurse at home that lets me know when its not ok to let simple things go by because I don't "feel like" heading to Boston. She was the one who picked up on the seizures that picked up in intensity and led to Brig finally being put on medication. She lets me know its "OK" for me to have alone time. Maria, we LOVE you. You are family! We have an amazing community that has taken Brigitte under their wing and thinks of us during every season....not just football and cheer. We love being part of the Wildcats and East Celebrity Elite.

So, as hard as it is to think that I am going to outlive my daughter, I have to live in the present. She is kissing my arm and has said "Mommy, I NEEEEED you" 100x today.....yet, she has no idea how much I need her. We will have times when we spend days in the hospital trying to "fix" the latest crisis.....but we are going to "live it up" as best we can, for as long as we can! My dad sent me an email today. It said "Brigge is a fighter. Always has been. Always will be. I believe in her strength and her perseverance." I do too, Dad. I do too. So we will fight the good fight for as long as she'll let us and always remember we aren't "Saving Brigitte" nor have we called her "The Christmas Miracle" for nothing.