Segments

Bryson wearing ALL of his beads of courage!

Bryson helping me at the store!



After reading so many blogs for such a long time something occured to me....parents of children who are "fragile" or have been "fragile" live their lives in segments. Everyones segments differs. My segments are six month segments. Some people's segments are much shorter, some are longer. Cancer parents live their life from scan to scan. Parents of children who have passed live their life from angelversary to angelversary. Heart parents live their live from one cardiologist appointment to the next. We had our appointment in February and in the weeks leading up I feel the anxiety, the fear....and the closer it gets...the more anxiety I get. Then we go to the appointment, we *hopefully* get a good report and I breathe again. I feel the weight lifted off of my shoulders and then we laugh and play and wait for the next appointment, and hope for the best. It is awful that any parent has to live this way and I never understood it until Bryson was born. I never understood the pure agony and hell of WAITING. Waiting on surgery, waiting on labs, waiting on xrays, waiting on a doctor. I swear that time in a hospital CRAWLS! I have never seen anything like it! When I think about it my life segments when Bryson was born were super short, and fast and furious. What a roller coaster ride! Now.....we are kind of coasting. I feel the wind in my hair and I like it. I can do six months! Its a cake walk in comparison! :)
Oh and before I go, here are some cute Bryson stories. The kid is the biggest ham ever. I read on a blog the other day (I know, your shocked! Admit it) where a mother has a son who has had several heart procedures. She said he was kind of rotten and tempermental. She stated that his therapist said it was because he was a "celebrated child". I LOVE THAT! Bryson fits that to a tee!!!!!!!! So now I tell my mom, "remember, he is c squared!" He is so rotten. He is so happy when I get home. He shows off and is silly and he LOVES to say NO! So me and the kids ask him questiosn all night long and he always yells NO!
"Bryson, do you love mom?"
NO
"Bryson, do you love puppies?"
NO
"Bryson, do you know where babies come from?"
NO
"Bryson do you want 50% more cash back?"
NO
"Bryson, do you want a cookie?"
ALRIGHT (again, he doesn't say yes, he says Alright but I SWEAR it sounds like he is saying Hawaii!) I am gonna film it so you all can hear. So I always end up with my last question, which is...
"Bryson, where do you want to vacation this year?"
HAWAII
:) :) LOL!!

What the puck!

Well......Bryson was the honorary "puck dropper" at the hockey game this last Friday night. And it was, well, um, a pucking disaster! :D. Let's see...we got there early and Bryson was wound up and did not want to stand around. He is two people! I kept thinking,"if we could only make it to where we move closer to the arena he will be interested in everything and stop being so darn squirmy." So...we head down to the arena. They gave me a set of complicated instructions that I was sooo worried about screwing up. I ended up wearing the jersey for him because it was an adult large. He would have NEVER fit in and when I tried he didn't just say "no!"....it was more of a "hell no!". So here we are at the arena near the ice and things are getting crazy and then Bryson sees the blimp. It is a rather large, white blimp that flies around the arena and he LOST IT....LOST IT!!!!! Not only did he scream bloody-murder for a full ten minutes. He also tried to climb over my face and head to get away. Bless his heart, I felt sorry for him but we could not pull out of this. The heart lady kept looking at me with this strange look and all I could do was apologize profusely. They sang the national anthem....Bryson screamed....they did the presentation of colors....Bryson screamed....they prayed...Bryson screamed. I was sure that this puck dropping would go down in the history books as the worst puck dropping EVER. So then they say, "Go!". I grab him, step onto the carpet on the ice, and set him down to walk beside me, holding my hand of course. Thank GOD he only quietly sobbed as we did the drop.....or as I did the drop. We survived! We literally ran out of the coliseum and the minute we stepped out Bryson was all skipping around and laughing and was pointing and talking about the moon! Here he was chosen to drop the puck and he was WAY more excited about the moon. I told him that the moon was out every night and he gave it too much credit! LOL! Silly turd!
He helped me all weekend to clean up the house and do laundry. He absolutely REFUSES to use the potty. He played in the backyard while I worked on Sunday and I asked him if he wanted to hear music and he said, "whoa, yah!" because that is what he says instead of the traditional and boring, "yes!" So I brought out my phone and he informed me (through grunts and groans and the frequent NO's) of what music we could listen to. It turns out he doesn't like rap, he favors rock. This kid has an opinion about EVERYTHING! He cracks me up! He so runs our house! Anyway, all in all, good weekend...and the hockey thing was very humorous. Truth be told, I love a humorous story over a nostalgic, cliche story anyday! I think I am not going to be short in those stories anytime soon in my life! :)

What Dallas Childrens Means to Me

I have been thinking about this a lot lately because of the money we are hoping to raise for Dallas Childrens. We are hoping to hold a picnic for the doctors, and nurses and therapists and invite former patients of theirs. They endure so much heartbreak and sadness throughout the year and it would be so nice to let them see their "miracles". Please don't think for a minute that I am downplaying those who have passed. I am not! I know they (and we) think about them every, single day but I know it would be good to have some uplifting time and fun. So, with that, I have thought a lot about what Dallas Childrens means to me. Wow, where to begin. Let me begin by talking about the place as a whole. In one word....AMAZING! I have never seen a facility the likes of it, and I have never seen a more dedicated team of people. As much as I hate that we had to be there, I feel so privileged that we were a part of it as well. I am so proud to say that my son was a patient at Dallas Childrens. I am so proud to say that they saved his life!
I can't just give credit to the hospital itself...I have to give credit individually because that hospital is full of some of the most amazing people I have ever met! And, it runs like a well-oiled machine from top to bottom! (FYI, these are in no particular order)
Custodial Staff - every day they came in to clean my son's room and they ALWAYS smiled and asked how I was and were super sweet. Above all, I think about the night he nearly bled to death after surgery and I know they cleaned that up so that I didn't have to see it again. It sounds morbid, but think about it, they see things like that everyday.
Physical TherapistsThese ladies were so wonderful. They always came in with a smile and cooed and talked to my baby and gave me the attention I needed as well. They all had the sweetest, softest voices. Without them, my son would not have caught up to his peers so very quickly after having laid flat on his back for five months or more.
Speech TherapistsIf I am being honest I used to get so irritated because the speech therapists wouldn't let Bryson try to suck on a bottle and this momma was CERTAIN that HER BABY would suck a bottle just fine . I realize now that they were looking for what was best for my baby and they were so patient with me, even though I know I was super pushy. Because of them my son was able to come off of the feeding tube and now eats like a champ!
Massage Therapistyes, you read that right, they had a massage therapist. She was AMAZING! She was for Bryson but offered, over and over, to give me a massage. She was so gentle to him and her touch was so soft and her voice so light. He would literally melt to her touch. And, honestly, with all the poking and prodding he had to endure, these massages were so very much needed by my little man. Because of her, he is a snuggler and bonds easily with others. And, because of her many encouraging talks with me....I made it through in one piece.
Child Life SpecialistsThese ladies were phenomenal. They were instrumental in helping us from the beginning to the end of the hospital stay. They helped us with meals, rooms, gave us encouragement, told us about how the hospital works. They really helped us look at the BIG picture. They were the ones who made certain that my boys were able to meet their baby brother. They made it possible for us to receive special things at Christmas. I could go on and on. They are great people and because of them, I can truly say that every detail of my experience with Children's was positive.
Lab TechniciansThe funny part is I never met these people during our entire stay at Children's. Who knows, they could have been chained in the basement for all I know. LOL! Not really! My son had ENDLESS, and I mean ENDLESS blood work and tests done. And, day or night they were there...and they were FAST! They were able to check blood gases and they were crucial in my son's long journey of healing
XRay TechsBryson had so, so very many x-rays done. I remember at one point after it was all said it done I heard someone say, "I don't want to get x-rays for my son because he has already had a few and I don't want him overexposed!" I had to laugh....I was surprised after all the x-raying that Bryson didn't glow at night! LOL! He had just about as many x-rays as he did blood work! Day in, day out, they were there to take an x-ray. And they were always so very respectful and kind to us. They always spoke to Bryson as if he were there own. They made me so comfortable. They, too, were so crucial in my son's battle. And, let me tell you...when they were called in an emergency, they showed up FAST! They burn some rubber!
Echo peopleyes, I called them "echo people", much like the "Culligan man". LOL! I am not sure what their "official" title is. However, they too were always more than willing to rush over and do an echo and the mood was always tense at these times but they were very good about breaking the ice and making us more comfortable. Without them, my son's heart might not beat quite as strong and true as it does.
Cath LabThis is another set of people I never met. However their job was very, very crucial in saving Bryson's life. We had two caths, I think, maybe more and I know that it can be a risky procedure but they were always so careful with him. Because of them, he is alive and well today.
People in charge of feedsYea, I said another fancy name for someone. :) I am not sure what their title is either but I know this....during rounds they would be in charge of figuring out TO THE CALORIE how much food my son needed, what kind of food, how much volume, how it should go in...you name it. He was not an easy case for them but they put their heads together and always made the best decisions for him. He is a thriving 27 lb toddler because of them!
Respiratory TherapistsNow we are getting into the meat and bones of it all. I know they are called respiratory therapists but I find that they weigh heavy on the therapist part. I will never forget, a certain respiratory therapist, (you know who you are) on a particularly bad day told me, "this is like a bridge, and you have to cross it, but you will cross it." That meant so much to me. She and I were very close the entire time we were there. And when I had to leave Bryson at the hospital for any amount of time, I was CERTAIN she was in that room, loving on that baby. She just always knew EXACTLY what to say...she still does to this day. I remarked to my mom the other day, "it is beyond amazing that a child who was ventilator dependent for at least four months, has absolutely NO respiratory issues today!" She said, "that is because the respiratory therapists tooks such good care of his lungs!" It is so true! And, there were times when Bryson scared the hell out of them and they had to bag him and breathe for him, and they NEVER missed a beat. I have never been so impressed with a group of people. Because of them he is alive today and has no respiratory problems whatsoever! Not to mention I might not have made it out of there without them as well. I LOVE YOU GUYS!!!!!!!!!!!!!!
Surgeons and surgical staffThey saved my son's life....They weren't the only ones BUT without life-saving surgery there would have been no use for any of these other people. I know his surgery was diffcult...I know that after surgery he had to have emergency surgery in his room again. Decisions were made very quickly and with great precision. Think about it, they performed surgery on a heart the size of a walnut. I cannot begin to fathom! But it didn't end after the surgery. They came to check on his progress all the time. They were proud of their work...and of him. I owe them everything. He walks and talks and breathes because of the surgeons and their staff.
Surgical staff and AnesthesiologistsThis is yet another group that essentially saved my son's life. He had to be put on a bypass machine. That is terrifying and yet someone was in charge of this and in charge of every tiny detail of his surgery. He was a fragile baby and so I am sure the anesthesiologists were not thrilled to have to put him under but all this was done so beautifully. And because of this, my son is smart as a whip!!!!
NursesNot sure where to even start. What a blessing these people are to the CICU unit at Children's. I have never felt such love and compassion as I did by those nurses. I can't begin to list all they did for me. I made life-long friendships there. And I can't begin to list what they did for my son. The surgeons fixed him, they "healed" him. He had so very many problems after surgery and those nurses took care of him as if he were their very own child. After he was there for so very long, we had a specific "team" of nurses that took care of them. They are my family, now and forever. No matter how many times I cried, asked questions, laughed, lost it....they never, ever left my side. Even when my husband threw a tantrum (out of sheer grief) they never batted an eye and never once were they cross to either of us. I am so very blessed to have had them in my son's life. They were his "mommies" when I could not be. Who else could possibly count on any other human to do that for them. I am forever indebted, forever! Because of them my son is ALIVE!
staff of doctors on the floorThese doctors are crucial to the CICU at Children's. They make HUGE decision. They are responsible for SO MUCH and they take it so very, very hard when patients succumb. I NEVER felt like they were "whitecoats" or just doctors. I could come to them for anything....ask anything....say anything and their compassion was endless. One in particular took on our case late in the game and I believe his decisions honestly did save Bryson's life. It was his turning point and I know this man is responsible. His decisions changed everything. If I hadn't already been on child #3, I would have gladly named my first-born after him. Ha, ha!
I know I have gone on and on but I could go on for days. I remember so vividly being there and wanting nothing more than to leave and NEVER come back. As we walked out the door on February 4th, I have never been so relieved (and scared as hell!) but I miss that hospital and its staff more than anyone will ever know. I feel like we went to war together,and by God WE WERE VICTORIOUS!!!!!!!!!!!!!!!!!!!!!!!!!!!! I love you Dallas Childrens!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


p.s. If I forgot ANYONE I am so, so, so sorry! You know it was two years ago and I think I blocked out some things! :)

CHD Awareness

Never be ashamed of the scars that life has left you with.
A scar means the hurt is over, the wound is closed,
you endured the pain and God has healed you
I love that! The quote has Bryson written all over it! My sweet baby has been sick since last Saturday and it got scary. I worry so very much when he is sick, not just because of his heart but because we have come so very far that I fear if I had to see him in bad shape again, hurting....it would nearly kill me. The thought of him even having to go into the hospital, for something minor, makes me feel physically ill. I just can't do it again, and he can't either. However, he finally got a shot and is much better today. I love seeing him feel good!
Well it has been a super busy CHD Awareness Week. Let's see.....I have been lined up to speak about Bryson at a Go Red luncheon here at my workplace. It is so funny I am TERRIBLE at public speaking. I was in front of a camera for years but in front of people is an entirely different thing. However, when I have to talk about Bryson and CHD's, it just comes so natural. I never second-guess myself or feel nervous. Instead, I feel empowered....and blessed to be able to report a happy ending. Bryson has also become the ambassador for two campuses in our hometown and he is supposed to make visits to them sometime soon. The kids raise money in honor of him. It is just amazing, and overwhelming. One of the schools is Riley's and that has been interesting. I didn't tell him they were going to do it and then they announced it in an assembly in front of everyone. He was freaked out, but proud at the same time. His friends are so very interested in Bryson and Riley loves to talk about him. He even took some pictures from home for his friends.
After the luncheon at work we head to the hockey game where Bryson (and me) will throw out the first puck! So exciting!
From the information given to the school we had a wonderful man contact us about his motorcycle organization having a benefit for Bryson. I was speechless! I am so excited! We are talking bbq, a ride, raffle tickets, etc.... And, of course, little man is going to be there! We aren't sure yet exactly what we are going to do with the money but we are thinking we will give a portion to the American Heart Association, and then use the rest at Children's Medical Center somewhere in the cardiac wing. I am talking to some nurses and therapists there about it. They did save Bryson's life (and countless others) and so I want to give back. I will report back more when I figure that all out.
And then...one of my favorite nurses at Children has been made the Regional Coordinator for Beads of Courage. For those of you who don't know what beads of courage is...check it out at www.beadsofcourage.org. It is simply amazing and not just for heart kids...for any child undergoing medical "stuff". Bryson has MANY beads of courage...over 700 and she wants a picture of him with his beads. That ought to be interesting...he is two you know. LOL! I am so excited about this! I LOVE showing off my kid and I LOVE beads of courage!
Anyway, Bryson and I are trying our very best to get CHD awareness out there. Heck, I tell people in line at the grocery store. And, turns out, they all had heart kids or family too. It is a small world!
Anyway, I will be posting pictures of all these amazing events and can't wait to share my sweet (finally well) little man! Have a great weekend and a Happy Valentine's day!

It came....and it went

Peace...

It does not mean to be in a place

where there is no noise, trouble, or hard work

it means to be in the midst of things

and still be calm in your heart.... (unknown)


Just like the title says....It came...and it went....and I didn't even notice! September 30th came (the day Bryson had open heart surgery) and it never even crossed my mind. And yesterday I realized that February 4th (the day Bryson finally came home)came...and I never even though about it...not once. I am healing. Slowly but surely, I am healing, and it feels so peaceful. There were so many nights of wrestling with thoughts and fears and anxiety and without me even realizing it, those thoughts are fading. Instead those thoughts are replaced with silly grins and laughter and hugging. Bryson has the best smile now! He smiles with his entire face. His eyes slant, his nose crinkles, he shows every, single tooth and he is even getting a dimple. It just melts me! He will lay next to me and night, trying to be good and quietly go to sleep and I try so hard not to look at him because it gets him all wound up but I can't do it. I have to get one more glimpse and he always has his eyes open and he catches me and there goes that smile (of course there is a green blanket hanging out of his mouth!) and he just giggles! Such a treasure! I have realized that he is still such a baby. Diapers, still takes a bottle, has his lovey and wants to be held tight and I know I should be trying to potty train (I am some but he isn't ready) and taking the bottle away (it is only at night and early morning anyway) but I LOVE that he is still my baby. For so long I didn't get that baby stuff from him and when he came home from the hospital he didn't take a bottle or want to be held and so I feel like we just postponed it and NOW he is my sweet, cuddly baby. I love that! I love every inch of him and it feels so good to enjoy him without those fears and feelings! Sweet release!!!!!!!!!!!!!!! Praise God!

February

Well as you all know, it is February 1st and the start of Heart Month. A month that in the past really meant very little to me. I always assumed it was really for those who had suffered heart attacks, older people, etc.... But NOW, it is near and dear to my heart. It is ironic that today is the start of Heart Month and today Bryson had his 6-month checkup with the cardiologist....how is that for timing?
I am glad to say that the cardiologist said my boy was FABULOUS! Can you believe he is already 3 feet tall?!? It was funny because there were boys in the waiting room that were 3 and 4 and they were just talking to each other and then here is Bryson, taller than they were and grunting and pointing. They probably thought, "man, what is with that kid?" He will talk someday, I just know it! Hee, hee. Anyway, even the nurse said, "he looks a lot older than 2, he is tall!" He is such a string bean! He weighs 27 lbs, but there was a lot of wiggling going on so it might be more. Then we went back to the room and OH MY LORD, Bryson screamed and sobbed and cried like I have NEVER heard. Honestly, I have never heard him cry with such deep hurt. It was awful! She checked his stats as quickly as she could and then put us in another room and he just sobbed and then when I put him on the floor he ran to get my purse and give it me so we could leave. LOL! He was almost frantic, like a caged dog. It broke my heart and I know it bothered my mom too. I am not sure why he was so terrified. He has been there before plenty and never acted like that. He has never acted like that at the pediatricians but it has been a long time since he has been to either office. We went in the echo room and he saw fish and was happy and the very second the cardiologist walked in he screamed and melted into a puddle on the floor. Poor baby! He acted like he was going to have major surgery! He kept saying, "No mama!" So sad! My mom and I had to hold him down the entire time he got his echo. I felt sorry for the cardiologist too. He kept saying, "Bryson, I thought we were friends!" Anyway, the cardiologist said he was great! YAH! Oh and then this afternoon, out of nowhere (well it was a response from an email in 2010) I got a call from Children's and they wanted to interview me about Bryson's story. It was nice to be able to talk about it. I just need to do that sometimes. Anyway, they may include him in the newsletter so I will keep you posted. Tomorrow I am supposed to have lunch with the representative from the American Heart Association locally to talk about a Go Red luncheon we will have here at my work (for school district employees) and I am supposed to speak at the luncheon and tell Bryson's story. I tell you what, being this kid's scout or spokesperson or whatever you call it, is tough work! He is high maintenance! LOL! Anyway, it felt good to hear that everything is still fine. I know that us parents with medically complex children live our lives in increments. We live our lives holding our breaths until the next appointment, hoping that all is well and we can continue to enjoy time with our children. We worry incessantly about the appointment where it isn't all "unicorns and fairies". However, for now, I'm gonna ride a unicorn....on a rainbow....and go see a fairy! :) :) :)


Just a quick reminder that Congenital Heart Defect Awareness Week runs the 7th - 14th
Get educated - have a voice - spread awareness!
(CHD facts provided from The Children's Heart Foundation)
Incidence, Morbidity & Mortality


•Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

•Congenital heart defects are the #1 cause of birth defect related deaths.

•Congenital heart defects are the leading cause of all infant deaths in the United States.

•Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.

•Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.


Lifelong Disease


•Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.

•There are an estimated 2,000,000 CHD survivors in the United States.

•For the first time, more than 50% of the CHD survivors are adults.

•10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

•91,000 life years are lost each year in this country due to congenital heart defects.

•The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

•More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.

•There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.

•In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact


•Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.

•Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.

•Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

•The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.

•In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.