I created this blog for all our family and friends to remain in touch with Brody, and what's going on with him. To catch those who may not know what's going on up, I will give an overview. It all began Wednesday Feb 10, I went in for my usual ob check up. They did an ultrasound because I was 32 weeks along, and needed to get the proximate size (which was large he was already over 6 pounds). It was then that they discovered an extremely fast heart rate, and referred me immediately over to Bergan Mercy for further observation.
The Doctor I saw there is well known around Omaha for high risk pregnancy's, and felt I needed to be placed on IV meds immediately. It began with digoxin which they were worried might lower my heart rate, so had me under constant observation. They tried that for a few days without success so they started another medication called propanolol. Again, this didn't work so after a few more days they added flecconide. This all went on for about a week which was all the time the Doctor was going to allow, without delivering him.
Feb 17 at 1:29pm they delivered him by c-section. He initially cried (which relieved Doug and I), but followed with a period of silence. His Heart rate plummeted very quickly, and required immediate incubation. They took him to the nicu at bergan to begin the healing process. They gave him a few doses of adenosine to try to convert his heart rate back to normal. This didn't work so they contacted the cardiologists at children's hospital. After doing an assessment, the doctor suggested immediate transfer to children's for further treatment. Without hesitation we sent Brody on his way. Our plan was to try and get a good nights rest, and get myself transferred the following morning.
Plans didn't work out the way we thought they would. Two O'clock that morning I received a call saying Brody had just coded ,they had to do CPR on him, and they were waiting for cardiologists to get there. However, they said he was stable and would inform us on what they thought we should do (obviously I was stuck in a hospital bed). An hour later, I answered the phone and it was a nurse telling me that Daddy might want to get over there, that it wasn't looking good. Then she put the cardiologist on the phone. He said the only thing we can do to save his life is to put him on a heart and lung vent (called ECCYMO). He said there's only a 40% that he will even survive the placement, but thinks it the best chance he has. Without hesitation we accepted and Doug was on was over to see him. I told the nurses that I needed to get over there ASAP, and they rushed to get an ambulance so I could be there to say goodbye, or so I thought.
An hour later I arrived just in time to see him when he got back from the procedure. The strong little boy beat the odds, and made it! Now his heart could have a rest, the machine actually takes all his blood out that would be circulated by his heart, filters it, and pumps it back into the circulatory system just as the heart should do. It is an amazing machine that is serving as his heart for the time being. It requires three specially trained nurses to be in the room with him at all times. Along with that he is on two meds to keep him comfortable, and prevent him from pulling out any of the tubing. Lactated ringer for nourishment, insulin to regulate blood sugar, heparin to thin his blood, and various meds to help keep his heart rate stable.
Just as we thought we were in the clear the dropped another bomb. They thought reason his heart wasn't strong enough to beat on his own, was because his aorta was too small. Therefore, they had to place a stent with a balloon on it into the heart, inflate the balloon, and hope that it created a larger opening in the aorta. This was done with success to our relief. However it didn't fix all the problems. He still would occasionally convert back to svt (supra ventricular tachycardia), and required medication to convert himself back to sinus (normal) rhythm.
As time went on the time he spent in sinus rhythm began increasing, which was a huge relief to us. However, the amount of cardiac output that he puts out when tachycardic was close to none. Which means without the machine doing all the work, he would not survive.
So that brings me to the next dilemma. In order to be on ECCYMO they have to put the patient on a blood thinner in order to prevent clotting. Therefore, Brody is on Heparin in large amounts. A huge risk for this is internal bleeding because a small bleed can be fatel when on this drug. Bleeds usually originate in the brain, so they monitor his brain by ultrasound daily. This morning they found a few suspicious spots that might possibly be blood spots. Normally, if they noticed this they would discontinue the use of ECCYMO. However, the doctors know that his heart is not strong enough to survive on its own yet...so they have no choice but to take the risk of a bleed. We have an ultrasound tomorrow morning to follow up and make sure the spot is not growing, and will meet with the doctors again for plan of action.
That is where we stand at this point. It has only been a week since this all began, but feels like an eternity. We appreciate all the support we have received from all our friends and family. Without that we would not be able to get through this extremely difficult time. I hope everyone continues to pray for Brody, I believe that is what has gotten him this far.
I was in the restroom today and looked at myself in the mirror and to my surprise there was a ladybug, and another was in the shower with me later that night. It gave me hope and courage to go on throughout my day.