Paced Again

They were able to pace him back to a normal rhythm this morning, He is still hooked up to the pacing machine and they are about to do another echo on him. They are thinking his left atrium may be starting the arrhythmia, since his mitral valve is not functioning properly it is stretching the left atrium and causing higher pressure in there. If it is stretching, it continues to have a higher risk of putting him into this flutter. Learning about all this makes me not want to take him home. I want to put him back in Bryttney, he can live there for the rest of his life.  The electrophysiologists (rhythm specialists) are pretty sure he is going to flip back into flutter at some point. They are hoping the new medication will prevent it and are giving him an extra dose now that he is back in normal rhythm.
Bryt and I are having a hard time, this is a whole new set of problems stemming from the original problem. Even though his numbers look good and he tolerates the arrhythmia quite well, he can only last like that for a short time. I don't know what is going through either of our heads, I am just at a loss. We have no clue what the future holds, and have no idea what to prepare for.  My mother has always told me "everything you do prepares you for something else." I don't know if this is preparing me, or if this is what I have been prepared for. This is truly a test of patience and faith.
I have been in a lot of situations that are not ideal, but have always pulled through. I like to think I have been prepared to be strong enough to pull myself and my wife through this. We have had a lot of tears and frustration but I am trying to get as much as I possibly can out of this.  It does confirm my desire to want to make more of a difference in the world, and maybe that is one of the reasons we have been put in this situation. Maybe it is preparing both of us for something bigger and greater than ourselves. The nurses and doctors here are certainly making a difference in the world, and I am glad to meet such amazing and selfless people.
I think we are both handling this fairly well so far, neither of us are in constant tears, and we are both comfortable with the team of doctors we are working with. We each take our turn breaking down, but we are here to support each other through the tough times. It is hard to accept this new level of responsibility as 'normal.' Michael will have special needs and medication for a good chunk of his childhood. I look forward to the future when we can look back on this as a growing experience together. Thank you all for your support, we could not do this without everyone behind us %100 of the way.

Stinkin Arrhythmia

We can't kick this Arrhythmia. The rhythm specialist was called in again tonight, she upped his drugs and tried to pace him out of it a couple times. She succeeded 3 times, but he kept going right back into it. They have been talking about a new drug- Amiodarone, it is the more powerful out of all the anti-arrhythmic drugs. The reason they don't use it first is because it has a couple bad side effects and they don't want people to be on it that long.  Since they couldn't pace him out of the flutter while he was on the sotalol and digoxin, they started him on the Amiodarone. They waited for about an hour to let it get into his system and then tried pacing him again. That didn't work at all, he is just stuck in this irregular rhythm. They did manage to slow his heart rate down a bit, but now it is very irregular and all over the place.  She is going to let it get into his system through out the night and then try to pace him again in the morning. If that doesn't work, they are going to try to cardiovert him, basically shock him to reset his heart, similar to a defibrillator...which is pretty terrifying to think about. They said it takes 7-10 days before you see the full benefit of the new drug, so if they can't get him out of this rhythm we will be here for another couple weeks.

Our little guy is back on the CPAP machine, I call it the rhino machine... I strongly dislike it, but it does make it easier for him to breathe. We are both emotionally drained, this is a ride of ups and downs and unexpected turns. I am exhausted and can't even comprehend how I feel about the whole thing. It is fairly frustrating, and not easy to accept. We are really hoping tomorrow will bring better news. They may be able to pace him out of it in the morning, and the new meds might be able to keep it at bay. We have good doctors and nurses, we just need to have faith that they will be able to pull him out of it tomorrow.

Little Trickster

ugh... little trickster.. He's back into artrial flutter.. right when I posted the last post he flipped into it.. We gave him a higher dose of Sotalol  just now. They may have to zap him out of it again. His heart rate is a perfect 173, it is precise and steady and he is having no problems what so ever.  He is in an irregular rhthym again, so they will have to break it.. what a little trickster. We are not too worried about it as this will be the third time they get him out of it. The Sotalol may kick him out of it, but they are getting prepared to zap him again. Time to have a morphine ride again, which kind of sucks since he was just getting active.
They are upping his dose of Sotalol again and then giving him a second anti-arrhythmic medication. He definitely likes to keep everyone on their toes.  This is getting frustrating, there doesn't seem to be any cause. It just seems to start randomly. The rhythm specialist will be here in an hour to pace him out of it.

Face Mask off

Michael was up and alert again this afternoon. He was looking around and responding to our voices. It's so nice to see those little eyes again. We haven't seen him alert and looking around since Sunday. His heart rate has been 130-140 for the last couple hours, it is still dropping to the 80's every once in a while, but it has been few and far between.  We were able to hold his hands and talk to him and sing to him. He looks really goofy with his rhino mask on, but we were happy to see him so alive again. He gets upset when the nurses are changing his diaper or check him, so that is a good sign.  His lungs are starting to look better and his blood gasses are improving as well. He is starting to do that little koo again, he is just a bit horse still. Overall he is looking really good.
They just took off his face mask and put him on heated high flow oxygen, his numbers are still looking really good. What a day.. now we just have to wait and see how he does for the next couple days. We will most likely be in the CICU the rest of the weekend. It looks like he is finally making some good progress again. I really think us being here and telling him he can do it helps. I don't know if there is any science behind it, but I really think having people cheering for you makes a difference. We have been at his side telling him he can do it most of the day. We are so proud of him, he is such a little fighter. Almost all the nurses know him now too, so we are all cheering for him. He has been being a little stinker, and causing lots of worry, but everyone that meets him loves him. I can't wait until he's awake again.  This is a roller coaster ride, I am happy to have the opportunity to relax and refill my adrenaline for a bit.  Thank you for all the prayers and support. We are not doing this alone.

Day 16

Day 16 in the hospital. After seeing him doing so well last week, everyday gets harder to see him hooked up to all this equipment. His heart rate is somewhat stable, but it continues to drop into the 70's and 80's every once in a while. After walking into the room today and seeing no change from yesterday it is hard to think about leaving him tonight. I called his nurse a couple times last night and they assured me he was fine.  Even if his vitals are looking ok, and he is not turning purple, he is still hooked up to all this stuff, I can't accept fine. I want him to be doing great, and getting all this crap off of him.  He is off all of the pain meds now, but still has multiple cardiac meds pumping steadily. I reserved us a sleep room for the night. I can't think of leaving him again, it's getting too hard to walk into this every morning. At least if I am here with him, I can feel like we are going through it together. I don't know if he will remember any of it but I do not want him to think he was doing any of this alone. I don't want him waking up in the middle of the night scared and alone.  Zoey will manage without us for another night or two, she has lots of cousins and aunts and uncles to play with. We both miss her so much, but we feel like we need to be here with Michael. I think every morning Bryt and I come in expecting him to look better and have a little less accessories. I don't know if us being here has any benefit, but I like to believe it does. I love this little guy so much. I wish I could put all this crap on me and let him go play with his big sister.
Going home every night does have plenty of advantages, but I think we can help him heal a little quicker if we are here holding his hand every step of the way. Thank you for keeping us in your prayers, we will bust out of this place eventually.
After talking to the nurse I feel a bit more comforted, most of the pumps in here are turned off. The Pacing machine is in here just in case, and his oxygen continues to stay at 100 even when his heart rate is so low. I think this face mask he is wearing is the hardest thing to look at. It is hard to stay positive when you see your little baby like this, but we have to try. Something that always helps me be positive is to think of all the things I am grateful for.
I am thankful we live so close, and thankful we have such amazing families. I am grateful for our doctors and nurses, their confidence is helping us be comfortable and confident. I am thankful for our wonderful daughter and how forgiving and loving she continues to be. I am thankful I have a relationship with the lord and have something to lean on when nothing else seems to comfort me.
The blessings and experiences we have received through this experience have been wonderful. Bryt and I are becoming closer than ever and our families have been nothing but amazing. The people behind us continue to shower us with love and support. I am learning a lot about cardiac kids and able to follow most of the medical conversations.  Our surgeon is one of the best in the world and has been doing this for years. There are so many things to be grateful for in this life. It is easy to forget how many good things there are when you have to go through something so hard. Trying to remember all of them is something that can help me stay positive.

Paced back to 'Normal'

The rhythm specialist showed up around 1 this afternoon, Michael had been on the Sotalol for about 3 hours. They said this was the peak time to try to get him out of the arrhythmia. They started hooking everything up and kind of explained what was going on and how they were trying to fix it. To pace him out of the rhythm, they try to put an extra beat between the irregular beats. I don't really understand how it all works but they were able to get him out of the arrhythmia within a couple minutes.  It took them about 40 minutes to do it yesterday, but part of that was setting him up with the wires and breathing tunbes. Today he already had all that stuff in. The doctor showed up, and we both headed to the hall. Bryt had to use the restroom so it took us a couple minutes to get out of the ICU. Right when we got out the door one of the doctors was walked passed us and told us they were done. It only took them like 3 minutes to get rid of the flutter. We were both shocked, what a relief.

We had to go get lunch, so we went out for a little bit. When we got back to his room he still had the pacing wires in and the pacing machine was still next to him. His heart rate is all over the place, from 100 to 140.  The nurses said this is better than beating so fast consistently. They said it's too early to tell what will happen, he might just have an irregular heart beat from now on. They don't know if the Sotalol will have a negative effect yet, so the next 24 hours will be monitored closely. I feel worried about him, I don't like his heart rate being all over like this, that is how it was before he turned all purple yesterday.  I trust the doctors and I know they are trying to figure out the best balance for him. They say he only likes his stew a certain way and they just have to find the recipe. 

I am having a hard time seeing him hooked up to all of this stuff again, I just want him to be ok and on the path home again. I know he is not comfortable with all this crap hooked up to him. I just want to see that little guy I saw last week. I keep asking questions that no one can answer. All we can do is be patient and see what happens. 

What is stable?

The doctors keep telling us he is 'stable.' I finally asked what that meant to them, because to me it doesn't mean being hooked up to tons of stuff and getting additional medicine and treatment. The nurse explained it in a good way, she said as long as his organs are getting the proper amount of blood and oxygen we consider that stable. Even though there are some kinks here and there and we have to keep tweaking things, his body is still tolerating everything good enough to get his organs everything they need.

We walked into the hospital this morning and Michael had been moved to another room. He is hooked up to a couple more medications and the pacing machine still. It was a little overwhelming walking into the room with all this electrical equipment, but me and Bryt both feel ok with everything today. It is starting to look like he will be in the ICU for a while. They were not able to pace him out of the flutter and gave him some more Sotalol. Yesterday they thought the Sotalol is what caused the heart rate to slow way down and back up the fluid into the lungs, but today they are thinking they want to give him one more chance at it since there was no definite proof it was the Sotalol. He is on a bunch of Morphine and doesn't seem to mind any of the stuff hooked up to him. But it is sad to see him in this state. You can tell he is just really drugged up, I can't imagine he is comfortable. He has an IV in his head, an IV in his right arm, a PICC line in his right arm, a feeding tube down his nose, pacing wires down his throat, blood pressure cuff on his leg, O2 sensor on his other leg, the heart rate monitors, EKG monitors, and last but not least the big Rhino face mask. It is hard to see him like this and I don't really want to post any pics of it. Some good news is the current flutter is not as bad as the one on Monday, the atriums(top parts of the heart) are beating at about 380bpm and the ventricals(bottom parts of the heart) are picking up about 200 of them. So his heart rate right now is about 200bpm. They really want to get him out of this arrhythmia. They are going to try pacing him again around noon after the Sotalol has been in his system a bit longer. Bryttney and I are doing ok, this is not easy to look at, but we are starting to get used to all of it. The doctor told us yesterday this was not going to be a quick fix and we needed to start preparing for the long road. It's hard to hear that, but now we can at least kind of prepare and not get our hopes up. We are glad this all happened while we were still here, if we would have been sent home, this could have been way worse.