Steady as We Go

Things have been going about the same. We are just waiting for him to gain strength and heal. We found out today that he has a collapsed lung. This might have happened when they took him off the vent. Theres not much they can do for that, so they are just keeping an eye on it. I have been staying all night at the hospital because he cries now, so I feel he needs me more. When he does cry I place my hand on his head and talk to him and he usually calms down (theres not much more I can do for him since he can't take a bottle). His BUN and Creatinine levels have came down alittle which is good (kidney function). The doctors are saying it's going to just take time for that to get better!They increased the amount of milk they are giving him, and hopefully will again tomorrow. Daddy's birthday is tomorrow and Bryson's is Monday so we might try and sneak away sometime to celebrate. I never really understood the saying "take it one day at a time", until now. It's so hard to think about tomorrow when you are worried about what's going to happen today. I hope the worst is behind us, but I keep praying that we don't get anymore bad news. It's been a roller coaster ride since he was born so we don't want to get too confident.

Finally

Yesterday was a good day for the most part!Brody made the move to the NICU without any problems. The highlight of my day was getting to hold him and change his diaper! I never thought I would ever be so excited to change a poopy diaper! I didn't want to let him go...I could have sat there forever (well, if my bladder would have allowed). The doctor noticed that his blood work that shows kidney function has slowly worsened over the last three days. Just to be safe he call a pediatric nephrologist to come evaluate him. They did an ultrasound at the abdomen, and noticed that one side of one of his kidney's is very swollen. She thinks it's from all the trauma his body has been through and that his body should be able to heal on it's own. She started him on a low dose antibiotic just to be sure that there is no infection there. If it would happen to worsen, dialysis would have to be considered. Today they might take him off the vent!!! He is getting room air through the tube, and they feel his lungs are strong enough to handle it on there own. I will keep you informed as the doctors round on him today.

Recovery Mode

Brody was wide awake when we got there this morning. He was kicking his legs and had his eyes open for about an hour while we were talking to him. All the staff at children's hospital are amazed at his progress, and keep stopping by to check on him. They are moving him from the PICU (pediatric intensive care unit) back to the NICU (Neonatal Intensive care unit) tomorrow! They feel he is stable enough to be monitored over there. He is resting comfortably now with his husker hat on (thanks papa Dean and Grandma Sue). Now is time for the little man to recover and heal from all the surgeries he has went through. They think within the next week he should be ready to come of the vent. He is truly a miracle:)

Strongest Boy I Know

Brody is now free from ECMO, and is doing great! His heart rate and blood pressure has remained stable thus far. When we left him a few minutes ago he looked so comfy without all those extra chords coming out of his neck. We still have a long way to go until recovered. He has been through so much already. Please continue to keep him in your prayers for a successful recovery. Doug and I are going to listen to the physicians plan for him tomorrow morning, and I will let you know what that is. I know I've said it several times, but thanks again for all your thoughts and prayers. Until you go through a traumatic event like this, you never realize how important family and friends are.

No more ECMO

We just gave Brody another kiss goodbye...as they prep to decanulate from ECMO. The line goes through the carotid artery straight to his heart. They said the procedure itself will take a few hours. They are going to clamp him off of the machine for at least an hour to see how his heart handles it on it's own. If tolerated, they will then open the area up and take the tubes out. The part that takes the longest is repairing the veins and artery. He said he is going to do his best to save as many of them as he can. The ones that are in worse shape he will have to sew them off. The better conditioned ones he will try to sew back together and repair so they can be used at a later time if needed. We are just praying that his little heart is strong enough to do this on it's own.

A New Day

It was a very late night yesterday. They finally got Brody back to his room about 1:30 Am, and we were able to go see him. He looked very good considering what he had just been through. It turns out there was a third pathway that was found, and had to burn it also. It was right next to the Av node so they didn't burn it all the way through for fear that it might put him into AV block (which would them require the, to insert a pacemaker). So far Brody has stayed clear of SVT since the surgery, and they are planning on taking him off ECMO this afternoon. When the doctor came to talk to us after the surgery he told us that this case is something that his buddies at Boston Children's hospital would never believe. I didn't really understand why it was such a rare case he just said something about for his age...there were parts there causing problems that you only see in older kids. Last night Doug and I realized how amazing all the physicians are at Children's. Everyone of them that he has seen has saved his life. I could never imagine having him at any other place. It is the most amazing facility for both support of our family, and medically for our son. They are discussing the time that they will take him to remove him from the machine , but it should be later this afternoon.

Update

ok, so the doctor came back and said that as he was leaving he received a phone call from the operating room saying Brody went back into tachycardia, they had to go back in to see why and possibly burn another spot. Not out of the clear yet..will keep you posted.

Answered Prayers

The best moment of our lives....The surgery went great! The doctors found two pathways that were causing problems and burned them which took him out of SVT. He is going to get sutured back up in about 30 minutes and then head back to his room for recovery. Thank you for all your prayers thus far. Please continue to pray that he heals quickly, and continues toward the journey of healthiness. The doctor seemed very confident in the results but said that 'the worst part over but not out of the woods'. Thanks again for all your support!

It's Time

They just came to take Brody for his procedure. Very hard to let him go, but we have no choice.They say it can take anywhere from 6-8 hours. He was very alert before he left...it was very strange. He kept opening his eyes at the sound of our voices, and moving his feet and hands. I think he is trying to tell us that he is going to be okay. God please watch over our little angel!

Moving Forward

Last night the nurses started raising Brody's temperature with success. He is currently at 96.4 degrees, and they want him to get up to 98 degrees. Doug and I got to the hospital this morning just in time for all the action. The PICU doctor had just arrived and was already hard at work. All the cardiologists were in today and had a meeting about the plan of action for the week. There first request was to clamp off the ECMO machine, and turning down his arrhythmic medications so they could run a scan of his heart function without the help of those things. It was very scary, but only his blood pressure raised mildly. Dr. Erickson came in and had a meeting with Doug and I about his intentions. He explained how hard this situation is because now that Brody has gone 48 hours in sinus rhythm, it makes him question what he should do. Had he went into SVT last night the decision would have been simple-go ahead with the procedure. He explained the procedure he was talking about. It is called ablation. They would do it via heart cath placement through the leg and "map" out the area that is mis-firing. They would then "zap" the problem area to stop the motion. There are a few very large problems with attempting this. First, the area they think is where they need to zap is very close to the AV node (the normal conductor) and if they hit that by accident they would have to place a pacemaker in order for him to have effective functioning for the rest of his life. Second, he will remain on ECCMO during this procedure which always puts him at risk for bleeding. Last, they can't guarantee that they are going to be able to find the exact area that is causing problems because Brody's heart is so small (just imagine the size of a babies fist...that's how small his entire heart is). After explaining all this to us he asked us what we wanted them to do. They could wean him off the meds and ECMO machine and hope he stays in sinus rhythm, or go ahead with the procedure. Doug and I agreed that we wanted to put his life in the doctors hands. They know whats best for him, and we want to do whatever we can to keep him alive. The doctor said he is talking to colleges throughout the united states about this rare condition, and they all feel the procedure is going to be the best thing for him. Therefore, he is going to converse with the other cardiologists and hopefully get the procedure done tonight/ this afternoon sometime.
His dad and I hope that he can remain strong enough to go through another procedure. He is such a fighter, and has so much support I think he can make it through almost anything. He opened his eyes for his dad and I this morning. It was just for a split second, but it brought tears to our eyes finally getting to see those beautiful baby blues! Please keep him in mind this afternoon as it could be the most important moments of his life thus far.

A new day

Today was the day that they discharged me from the hospital. Kind of hard knowing that I won't be just a walk away anymore. It started out with great news: his ultrasound results looked great! Not only did they not worsen, but the radiologists think it actually might have improved a little. They placed an NG tube (goes into his nose and straight to his stomach) in order to begin giving him very small amounts of breast milk. Tonight the plan is to begin warming him to normal temperature. They consistently kept him at 94 degrees because of his cardiac arrest. In order to protect the brain they do this. Warming him is kind of scary because as his temp rises, the more at risk for seizures he is. He moved his arms and legs quite a bit today. They think he is starting to feel a little better, so he is more active. However, they can't take the risk of him pulling out any tubes or lines so they had to increase his versed to calm him down. The nurses were great...they washed his hair today, gave him a HUSKER blanket, and felt bad for daddy so gave him a yellow hat and wrote an H on it for hawkeyes! Other than that we are just continuing to wait for further improvements.
We went forward with Bryson's birthday party today. We felt it wasn't fare to him if we postponed it. Besides, it gave our family a little break from the hospital and got our minds on something else. One things for sure, since this all started it definitely makes me appreciate Bryson so much more. There are certain things that you can't control, but the time you spend with your family should never be taken for granted.
Doug, Bryson, and I are staying at my parents tonight to be closer to the hospital. We will give an update tomorrow after the doctors do there rounds.

Hanging on

Trauma can bring very interesting emotions. The last couple of days we have gone through shock, denial, anger, and frustration. Today was the first time since this all started that we are at peace. We realize God has a plan, and we have no control over what he intends for our little one. Having him baptised reassured to us that no matter what happens, he will be happy. It humbles us to know that we have the support system that we do. People we haven't talked to in years, are checking on us. People we hardly talk to are offering their help, and the people we are closest to are standing beside us 100%. We could never express the appreciation we have for everyone following and supporting us. The prayers are so important to us because we honestly believe that is whats making him stronger. We are sorry we are unable to return everyones phone calls, but know that we will never forget that you cared enough to check on us. Brody is still putting up a good fight. If he makes it to 4:30 am without converting to SVT, it will be 24 hours in sinus rhythm. That would be a very large milestone towards healing. We will have another ultrasound of the head tomorrow morning, and will find out if we can continue ECMO therapy. We are keeping our fingers crossed, and hoping for the best.

In God's Eyes

Brody stayed strong for most of the night. He went into SVT once around 4:30am and he was able to pull out of himself after about 30 minutes. This morning started with a follow up ultrasound to check the status of the blood that was confirmed yesterday. They wanted to monitor it so that it doesn't grow larger or go into the brain. Results show a trace increase in size of the blood spot. However, since the spot didn't grow very much they are allowing the current treatment to continue. Which is good news so that they do not have to take him off the ECMO (which is what is pumping his heart and lungs for him currently). Father Tom was here shortly after this and Brody Dean was baptised with some of his closest family around. We are in the 8th hour of him being in normal rhythm which is a new record. He is continueing to be strong and a fighter. All your thoughts and prayers are appreciated.

New Blog

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.