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!

Fontan day

We did it! Fontan and tricuspid valve repaired... Dr. Spray said his valve was very complicated but was able to stitch and sinch and not replace... So that part is good! We finally got to see our boy about 1pm.... All was god until his heart rate went up to 200.... Then dropped to 30.... They had to call a code blue on him and use his pacing wires that stick out of his abdomen but are connected to his heart ... Hooked him

Up paced him  with the pacing wires. ( external pacemaker) and got him

Back into sinus rhythm. Along with a STAT EKG.... echo.. Blood gases... Now he's resting and he did get to drink a little cup of water.... His cardiac chest tube will stay in a few days along with his ART line( line in artery that can measure pressures very accurately.  He has 4 peripheral lines.... Had 4 units of blood today and 250 ml of albumin... His blood pressure is low and fluid helps bring it up. He is on 2 liters of oxygen and oxygen salutations are 93% compared to 82%.... He's not a smurf anymore.  It's hard to see my sweet little boy like that... 

Fontan Time

It's already that time!  Seems like we were just preparing for the 1st open heart surgery... And here we are 2 years later ready for the Fontan! This of course is a huge deal for Brody... Even though he looks great.. His little thumper is ready for this surgery! This surgery will not only entail the Fontan surgery... But also His leaky tricuspid valve. The Fontan surgery will entail redirecting the blood flow from the inferior vena cava to his lungs. In a normal heart blood is pumped to the lungs, in Brody's case the blood will passively flow into his lungs via a path created by his surgeon. Explaining in detail is quite complicated so this is putting it lightly. Along with redirecting the blood flow to out little mans heart his tricuspid valve which is the valve inside his heart, will either be stitched, have a band put around it or be completely replaced. We will not know the specific approach until the surgeon can visualize it, meaning not until surgery is on place. We are hoping for a stitch versus a prosthetic valve due to more complications when you introduce a foreign valve. With all that in mind we have complete confidence with our Surgeon, Dr. Thomas Spray and the medical team here in Phoenix and in Philadelphia who are working hard for Brody. We travel to Philadelphia and take Brody to the Children's Hospital of Philadelpia AKA CHOP in the heart world. This hospital started the 3 staged surgeries for Brody's specific heart defect , they are ranked #1 for cardiac care and have some of the best surgeons in the US. Brody will be under the care of Dr. Thomas Spray a very we'll know surgeon in the heart world! All we want is the best for our boy and CHOP is the best! We leave mid June and are praying for a quick return home! Big Sister Charli will be comming out with family the week after surgery. Having Brody for a little brother I think can be a bit challenging, but Charli is a champ and rolls with the punches, literally Brody is a bit feisty and in about another year I think will be bigger than his big sister. Life has been wonderful with these two beautiful kids, we are blessed and are looking forward to more fun times! This past year has been non stop with family, friends, trips and just life in general! All is good. I will keep everyone updated via blog or Facebook! Let's do this!!!! God is good... Hug the ones you love... Tomorrow is never promised.