Off ECMO

Okay Brody is off ECMO... ExtraCorporeal Membrane Oxygenation..he is still intubated and his chest is still open... When they put you on a ECMO they basically sew in lines directly to the heart... So when he came off they had to stitch the holes where the lines came out. His chest is left open because his heart is swollen from

comming off and being stitched but also left open so the heart isn't squeezed by his breastbone...allows his heart to rest. Today has been up and down.. The first 24 hours of course is crucial.  Brody definitely does not like being intubated, his team has been trying to keep him calm all day, he takes a lot of sedation! He is mad... A fantastic sign! Fight the fight Brody! Today was a good day... Tomorrow will be even better!! Kiss the ones you love! Go Brody Go!

We have a blood pressure!!!!

Dr. Spray washed the chest today. His

chest is still open and ECMO machine has heprin running as well to keep blood from clotting... So all the bleeding in his chest sits there and clots... They washed his chest out and removed clots from around the lungs and heart . Allowing the lungs to expand more will of course benefit him. They turned down the machine to see if could tolerate it... He had a blood pressure on his own!!!!! This is definitely a good sign... Plan is today to rest his body.... Tomorrow rest his body ... Monday they are going to take him back to OR to see if he will tolerate comming completely off ECMO..... Fingers triple crossed. Thank you to each and every person who is praying for my boy and for my family..... I had a moment of weakness but today is good !!! Tomorrow will be better!! We are moving in the right direction... Kiss the ones you love... Tomorrow is NEVER promised!!!

Pray

Brody is on ECMO... Basically a lung heart bypass machine... Please pray for our boy. Kiss the ones you love...I Hate CHD... These pics are awful... Awful for you to see... But imagine what we see.... Please spread awareness for CHD... Research is key for all of our heart warriors!!! That's all I can say today

Post op... Pre-op

We are post op 1 week one day... Today we are pre-op for open heart tomorrow with Dr. Spray. Dr Spray is the best we can do for Brody... He tried to fix the tricuspid valve but just wasn't able to ... Brody had a malformed leaflet and Dr. Spray did his best... But her we are. Tomorrow  morning he will go back in for his 4th open heart! They will completely replace his tricuspid valve... Which should help  all theses issues. Basically the valve they tried to fix is now stenosed( hard) so it can't open and close to let blood flow thru it. The new mechanical valve will open and close and allow the correct flow... He will be our Bionic boy:) I have peace we are at CHOP and in Good hands! Brody is strong he is a fighter and he's got this! Let's get thru today.... Tomorrow is a new day with a new beginning for our boy! I have faith that it's out of our hands! Thank you for all the support from friends and family and even complete strangers that have come to be by our side and show their support! I talk to Brody every day and tell him he has an army behind him! Today I said Brody  tomorrow Dr. Spray is going to fix your heart again .... You are going to feel better... Let's just get thru today.... He said ....ok! Ok ok ok .... We can do this ... Brody can do this !!! Kiss the ones you love! Tomorrow is going to be good!!!

Post op day..... I forget

Ok! First of all I just wanted to say how amazing our friends and family have been.... Thank you to each and every single person who has been praying for our family. Power of prayer is amazing... And our boy is ok. He has definitely had a rough time.... I forget what I've said and what I haven't..basically he is going back under anesthesia today... Intubated ... Whole nine yards... They are going to go thru his groin and look at his heart... Look at the pressures in his lungs and just try to find what us going on.... He isn't comming around like they hoped so a little extra information from the Cath will god willing provide some answers. He has had his pulmonary arteries( vessels that go from his heart to his lungs) ballooned before... Today they may do that again or tweak something else if they find it. Right now we're just waiting to go. He does look better today than he has.... He has a PICC and has blood  products around the clock for the last 48 hours . He opened his eyes this am... We haven't seen his beautiful blue eyes because he's been so swollen but that's gone... He looked at me and said Uhhhhh ohhhhh.... Which is one of his trademark words! I said yes baby boy uhhhh ohhhh..... But we will fix it!!! He is an amazing amazing little guy and we are blessed he is ours!  My mom arrived yesterday with Corrie and Charmily!! ( Charli and Emily) nothing like having your mom!!!  Having them

Here is wonderful.... Kiss the ones you love!!! God is good! Today will be better!!!!

Post Op day #3

Ok!! Brody was moved to a private room in ICU... They took out the pacing wires that were in his heart that stuck out thru his belly!! So that's good.... Means they are comfortable with his heart enough to remove the wires.... He still has a lot of drainage comming from his chest/cardiac tube so that will stay in until the output slows..... We stopped all oral intake overnight to let his belly rest.... He finally pooped..... Which is huge .... Had to help with enemas and such but getting his belly working will make a huge difference! He even drank a bottle and has not vomited.... Again big deal!! His echo yesterday which shows function of heart and. All that jazz... Was ok.. His function went down which isn't good... But expected. Fixing the valve changed the volume his heart was use to so time will help. His regurgitation ( leaking in the valve) was severe before surgery... Now it's mild which is wonderful!!! His surgeon actually made two leaflets out of 3 ( tricuspid leaflets) normal valves have 3... Brody had 3 but one was severely malformed... So his surgeon used the tissue from the malformed valve to make two leafs... Today he's going to get blood.... And hopefully walk... Another echo... Chest X-ray and belly X-ray!! Thank you to all who have been praying for our boy.. Power of prayer is working!!! We believe it's all in gods hands! God is good! Hug the ones you love tomorrow is never promised!! Today will be a good day!!!!!

Post Op day #2

Brody had a somewhat peaceful night... Seth slept with him in bed... And all was ok. Today was a big day... Up and walking two different times and even took trip to the play room, which he was not interested in at all. He looks good.. But feels awful.. No smiles and just blah. He has had 3 different ivs go bad and he is not an easy baby to start ivs on. He does not have a central line ( iv line that goes straight to heart) trying to avoid if at all possible. Very invasive and his surgeon does not like to place central lines unless absolutely necessary. We are at that point... He isn't eating or drinking so we have to keep him hydrated and he has to have a line for his meds... So poor guy:( he did get another IV thanks to a very special Iv team... They didn't want to start one due to all his swelling but his nurse pushed and we got it... Hoping it lasts overnight otherwise he will have to have a central line. He did get his arterial line out( line in his artery)  which is an exact measurement of pressures... So that part was good. Pressures are good Trying to get him to drink and keep it down... But like clockwork he drinks and vomits ... Now he has an ileus another fancy term for his intestines not moving... Common after so much anesthesia... Working on getting his belly to work. So much more to explain but that's the just of today... Hoping for an in eventful night. Pacing wires are atill in his heart and sticking out of his belly... Just in case they need to pace his heart to get back into a normal rhytm ( shock his heart) he does have JET which is junctional ectopic tachardia..... Somewhat of a norm after this surgery.. Hoping it resolves itself in its own.... If not anti arrithima medications will help control it. Enough for today! Love to all... Hug the ones you love!! Can't wait for our Girl to arrive on Sunday!

Post OP day #1

Wheewwww.... Well let's see.. Brody style things didn't go to great last night. Sinus rhythm is the rhythm your hear is suppose to be in.... Brody was in junctionsl rhythms last night ( nursing friends ... No q wave) then he went into heart block 2x... They still have him sedated but are weening him off..... We want him to wake up... Cry and be a bit more mobile today. His o2 is back in the 70's because he so sedated and not moving. Goal today is wake up... Not give  Mom and dad any more heart attacks and take a few lines out! They did remove his Fontan line that goes directly into his heart... So one kind is at least something. 3 of his IVs went bad and infiltrated... So two new ivs were started. He just asked for ice and milk so that's good! Even though he vomits it's still working in the right direction. Fontan circulation perfuses his gastroin tract which he isn't use to... So eating and drinking will be rough the first week. He's swollen and puffy from all the blood and fluids from yesterday. But he is ok....and when he wakes up he's mad.. Which is a Fantastic sign.  I did get to hold my boy today! So that was wonderful... But short lived...More updates as we progress today! God is good!!! Kiss the ones you love!