Team Brody

Ok!!! Well we almost made it to one month being home.... Our longest stay at home yet! But our little man had to be readmitted for a blood clot in his leg. I had been watching it for a while and it was just not improving... His right leg was twice the size of his left and was a grayish color. We kept calling the doc and they just kept telling us to watch it... Well we were and it didn't get any better:( I even took him to the pediatrician and she said she wasn't worried about it! I was!! And good thing... Complete venous thrombosis ( fancy word for blood clot in him femoral vein) his body formed collaterals ( small tiny veins that grew because of the clot) these collaterals are basically what saved his leg! So very important to get the clot dissolved... So now our amazing little guy has to get two shots twice a day for 12 weeks:( Makes my heart hurt every time I do it.. He cries for a second then he's over it... But still No fun for a mamma to do to her sweet boy. They are called lovenox injections and it dissolves exsiting clots and prevents others from forming. We are off the low fat formula that was helping his lymphatic system heal, and all I can say is thank goodness because we are all sick of cleaning up throw up!! That formula was nasty and getting him to even attempt the bottle with that was impossible! I'm sure you have all seen that Brody still has his feeding tube inn... We went to see and ENT specialist because B was not taking the bottle, turns out one of his vocal cords were damaged/paralyzed making it impossible for him to swallow... We're hoping he recuperates and the other vocal cord compensates for the paralyzed one. Vocal cords can be damaged from intubations ( where they put the breathing tube down and put him on the ventilator) he was intubated 3x after the Glenn surgery so that is when it most likely happened. We are fighting with our little guy every step of the way! He actually took half an ounce this evening and I almost cried! If he doesn't learn to take the bottle soon he will have to get another surgery for a G tube... The feeding tube can't stay in long term because it ends up eroding his nose and throat. Taking a bottle is a huge deal.... One less surgery for our sweet boy! We did go out to eat ... Another big deal, Small things mean huge accomplishments for us! Life for our family will forever be changed by this amazing little boy! We are so lucky to have him and each day we cherish every moment and every smile! Don't forget to join Team Brody and help fight Congenital heart disease Nov 4th!!! I posted the link to join the team on Facebook! One week left to make your order for your team Brody shirts!! Just send me a message on Facebook! Love to all!!!

Home sweet home

I didnt want to post we were home yet because I didn't want to jinx it!! But I'm hoping we're in the clear for a little while:) So Were home:) life so far for Brody has proved to be Much better!! He is a happy growing boy! He is such a happy little man ( most of the time) we are still having issues with him taking a bottle... When they do open heart surgery everything you can imagine is very small and in the process sometimes the vocal cords can be nicked.... The vocal cords are right at the base of the top of his scar where they started his surgery. This may be the culprit to Him refusing the bottle, but again really not a big deal! Brody is doing so much better this time around...we have a cardio appt next week for another go round with everything.. Echo, EKG, bloodwork etc.... Praying everything looks good and no new surprises! We did go into radiology at PCH to check his lungs,an X-ray to following up on the chylethorax. Lungs look beautiful.. Going to continue to low fat formula to ensure his lymph nodes are healed! Hopefully he will be able to go back onto a regular diet soon! We are still being very cautious about going out with him... A small cold could mean a long hospital stay... So better safe! We haven't had many visitors either for the same reason....flu season is almost here:( everyone get a flu shot! Charli is getting hers this weekend... But that's my secret... She won't know about it until we get there... Less drama that way! Brody did go in for a well baby visit and was due for his 4 month well baby vaccines... Took all 4 like a champ... Didn't even cry... Heart babies have a outstanding tolerance for pain apparently! Life is good... We live day to day and the past few days have been great!! Hoping for more smiley days for our boy! Settling into home is so easy when you've been at the hospital for sooo long!! Ohh yes and one more note.... Brody has two of everything, we have a two story house so it's just easier, two swings... Two baby chairs... One baby popasaun chair... A nap nanny... And a baby chair that vibrates.... And where does he want to sleep??? In our bed:) I say whatever he wants he can have!!! One more thing.... The congenital heart walk of Phoenix is Nov 4th!! Save the date and look for a link to join Brody's team and help raise money to help fight congenital heart defects! Will be a good time, love to all!!

Go Brody Go

What a road it has been for our little man!! I know people always say how amazing their children are.... So I'm going to brag!!! This little guy is AMazing!!!! He has jumped thru so many hurdles... Been knocked down but he is back up and RUNNING! He had to go to the cath lab ... Again... This time they did find some narrowing in his pulmonary arteries. Basically think of an upside down T.... At the intersection is where they attached. The "Glenn" to his pulmonary arteries... There was some scar tissue and narrowing.. Explains why is was so fussy... The blood flow in his new surgery is passive blood flow.. So the blood runs to his pulmonary arteries just through passive flow...they balloned the intersection, thus opening the blood flow to his lungs:) along with the drainage of fluid from around his pleural space ( around his lungs) he is a much happier boy! We are much happier parents! Hoping that our little man has some easier days in the near future! We have the tube feed back in his nose.. These surgeries set babies back so quick... A week ago he was taking all bottle feeds and now were back on the stinky NG... But hopefully not for long, and honestly at this point it really is no big deal! Every time he went for a procedure... MrI.... Cath lab.... He had to be intubated and put on sedation meds.... So needless to say it takes it's toll on such a small little guy.... BUT he is our warrior and truly is an amazing gift from GOd!! He has shown us how lucky we are to have him in our lives. We always laugh now when we get a paper cut or a knee hurts or anything in regards to it hurts....we just catch ourselves saying really???? If Brody could talk he would say gimme a break a check out this scar!!!! Our little warrior earned the nickname Rambo slayer!! He even wakes up with scratches on his face to fit the part. Go Brody Go!!!! You are an amazing Boy and we love love love you! Love to all!!!!!!