Looking Good

Michael is doing really good today. They are slowly weening him off things as each day goes by. He is up to his goal feeds this morning and steadily gaining weight a gram at a time. He is still having some extra beats every once in a while, but the Amiodarone appears to be working and keeping him in a normal rhythm. He has been pretty active this weekend, we were able to hold him, and help give him a bath. He is finally off the CPAP machine. He looks so much better without that crazy rhino mask on. We are very happy he is doing so well.
This weekend was a big weekend for us. On Friday they had told us that he was slowly trending down and if he did not make any improvements this weekend they would have to intervene. They told us even though he was still looking ok, each day was not as good as the last. They said there was only so much medication could fix and the arrhythmia might be caused by something they physically need to repair. Since his heart is still so small, all of the options they have are extremely risky.  Our cardiologist was very comforting but very straight forward. He told us they were considering three different surgeries and all of them had high risks of complication or death.  After hearing that we were both a bit upset and had to come to terms with the possibility of Michael not making it.  The good news is he did great this weekend and did not go back into the arrhythmia. We have not talked to our doctor yet, but we both feel pretty confident about him starting his recovery again. He looks great and his numbers are all good. They took him off one of his cardiac medications and will continue to slowly ween him off things throughout the week.

A Mothers Hesitation

We just got back from visiting Michael today. Yesterday was rough not knowing which direction Michaels health was going in. The doctors explained that we were at a sort of fork in the road. The anti-arrhythmic medication they have him on is agreeing with him so far. The extra beats his heart is having are not the same as the ones that were throwing him into the Atrial Flutter. He woke up just after we arrived. The nurse was preparing a sponge bath for him as we came in today. Jaron was able to help wash him up and I was able to lotion him.

There's things the nurses do for him that I'm unaware of until we have a really good one that asks if I'd like to help. Of course I'd like to help! I'm his mother right? Since he's being fed through a tube his mouth gets really dry and the nurses swab his mouth with my milk. I've been sad for him that he can't eat, because I know that if he likes food as much as I do, than he's missing out.  Knowing that he is still, in some way, getting to taste and have some milk, I'm sure he looks forward to it. I am able to give him a dose of oral medication, and change a diaper every once in a while. The fact that I get so excited to do these small things is an indication of how little I've been able to bond with my son.

Every opportunity I get, I take advantage of. I held him for the first time in a week. I haven't held him since last Sunday. Last week I was still able to pick him up whenever I wanted and feed him when he was giving me cues. When the nurse asked me if I wanted to hold him today, I didn't hesitate as I usually would. There are so many cords and tubes and IVs everywhere. The one that made me nervous is the scalp IV, but still, there was no hesitation. I scooped one hand under his neck and my other under his bum (as we've been instructed over and over again). I held him cuddled in the nook of my arm and gave him kisses on the little portion of his face that doesn't have mask on it. I am so blessed to able to look forward to and long for these little moments. The moments that I get to use those teeny tiny baby diapers and finally change MY baby. The moment that I know he's getting a taste of MY milk. The moment that I get to bathe MY baby. These moments that come naturally to most mothers with their babies and I get these special little moments with Michael. Because these moments are few and far between they remind me each time that this is my baby and one day I will be able to take him home and cuddle with him the way every mom gets to cuddle their babies. I can't wait. I Can - Not - Wait!!

Emotional Rollercoaster

I am going to take a bit of break from updating on Michael for the weekend. He is in some what of a stable state at the moment. He has an awesome nurse that was with us all day yesterday and knows what to watch for. He continues to get his arrhythmia medication and he is still in a normal sinus rhythm. If he can make it through the weekend without any arrhythmia we are on the right path.
We talked to lots of doctors and nurses yesterday about his progress and how he is doing. Seeing him progress so slowly is not easy, especially after he was on a rocket to recovery last week. This week has been scary and full of emotional ups and downs. It is amazing how you go from being worried to content. Then you feel like giving up all hope. Then you feel frustrated and angry and you don't want anyone to comfort you. I am hoping one day the record of our experiences will help someone going through a similar situation. Because I have that thought in my mind I am trying to keep this blog as real and personal as I can. I don't know how people are supposed to react to things like this, it is a hard trial to endure.
 I was talking to a social worker yesterday trying to explain my feelings through this whole thing. I feel guilty for not having any emotions. I feel guilty for being comfortably numb. I feel guilty for accepting the reality of the situation and losing hope. I feel guilty for having a smile on my face when things look bleak. It seems like any emotion you feel can be accompanied by guilt, and none of it makes any sense. Of course I am going to be frustrated and annoyed. Why not try to make the best of a bad situation?  Sometimes it is ok to just be numb, no emotions can really help cope with the things that are going on in front of you, you just have to watch and absorb. This is a horrible roller coaster ride, and it's all in the dark. There is no way of telling what is coming up next, one minute you are terrified and the next you are so happy you could cry.
There is no doubt this is a rough ride for us as parents, but we also have to remember the rest of our family and friends. They are not only supporting us through this, but they are having to experience this second hand, without holding his little hands or adjusting his mask or singing him a song. I need to remind myself  that this is not only extremely hard for us, but for everyone else that wants to love and care for this little soldier.
This is hard, the hardest thing I have ever done. I'm sure I am an emotional mess, but I'm trying as hard as I can to get through this with a positive outlook and a smile on my face. It is easy to push people away and not listen to what they want to say. For anyone reading this that has gone through something similar or is going through something similar.  There may be a time when you get in arguments or fights with your friends or family. That will be accompanied by guilt and anger and sadness.. You will think "Why is this happening? Why in a time  like this? Why won't they just shut up? Why can't I just accept this advice? Why am I fighting with a person that loves and cares about me?" I would like to think this is normal for most families. When everyone starts getting stressed out, things are bound to give a little. Just remember that person loves you and is trying to help the only way they know how. They have all the best intentions and are only trying to comfort you. You will be trying to deal with this the only way that you know how, and may not be ready to talk about certain things. Just remember everyone around you is a wreck, no one is on the outside looking in. You are all going through this together, and eventually you will make it through together.
This was more for me than anyone else following Michaels progress. This is an experience that is changing me forever. It is changing my family forever.  I like to think that someday this entry will bring a sad and confused parent hope. I could not go through this without my beautiful wife, my wonderful family, and all of my amazing friends. Thank you for everything you have all done, I truly love and appreciate you all.

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.