Not so fast. . .

Well, the reduction in heart rate to a max of 110 didn't do the trick to helping him feel better. He threw up big time around 6:30 (from his 2:30 lunch and 4:30 juice) and Dr. Bromberg came back and said that he's just going to be harder to bounce back from this failure than he thought. Now we are not coming home tomorrow as they have started him on a milrinone drip (IV). They have to draw blood twice a day to check his levels so that consists of a toe prick and a ton of squeezing. Now that he's on coumadin, that should leave some nice bruises! The coumadin levels are not built up in his system yet so he's not bleeding easily just yet.

He was getting the most sound sleep he'd had in days when they had to come poke him. He's been up since and had some saltine crackers and sprite. Dr. Bromberg wants us to go a bit easier on the tummy so we didn't order him a dinner of real food. He might get some cheerios later if he shows any interest. He is sitting on Daddy's lap watching a Baby Einstein video from Child Life Services. Ms. Chris would be so proud of all the words he's practicing while he watches. He blew Nurse Laurie a kiss when she left and said bye and waived. She'll be back in the morning and has requested to have him if she doesn't get transferred to the NICU or something.

So, we've had a bit of a set back, but nothing we can't find a way to manage. Dr. Bromberg will be back to check on him in the AM and gave them his numbers even though he's not the one on call this weekend.

Can I Get an AMEN!

Well, it's just about the best news we could have hoped for. Connie is in Atrial Flutter, which is causing his mitral leak to increase and the left ventricle to dilate giving him the issues with failure. Dr. Bromberg saw it right away when he checked the pacemaker. He tried to convert him to normal sinus rhythm using the interrogation device but it was unsuccessful several times. He tried getting the atrium to fire at 300 bmp and the lower chambers at only 80 but he couldn't get the top chamber fast enough. Either the degree of failure won't let it go that fast or his little heart just isn't capable. That means he needs a cardioversion, which is what you see on ER when they use the paddles to shock the heart. It is painful and he needs to be sedated for the procedure so they wanted to wait until he hadn't had anything to eat or drink for 6 hours before they could give him the anesthesia. Then Dr. Bromberg got to thinking about the risks of him having a clot in his heart and the shocking would loosen it. When you've been in a fib or a flutter for more than 48 hours, your risk of developing blood clots in your heart is higher. When you have a heart like Connie's with lots of scar tissue and a very messy atrium due to the baffles and such, it is even greater that they could hide and not show up on an echo. Therefore, the safest course of treatment at this time is to anticoagulate him for two weeks to make sure that any blood clots dissolve before shocking him. The current plan is to start him this afternoon on chewable coumadin (blood thinner--kind of a yucky thing, but temporary so we're not complaining), give him a dose or two of lasix to get the fluid off his lungs and help improve the failure, and lower his settings on his pacer to prevent his heart from beating over 105 bpm. He may even go down to 90 tomorrow. We stay in ICU tonight and might come home tomorrow! He will still be in A flutter, but his heart won't be suffering from it because of the decreased settings and the fluid loss. In two weeks well go back to ICU for the cardioversion shock with the paddles. It should be an outpatient thing.

Praise God. It looks like we're avoiding surgery and caths for now! This is a common complication for kids who have had a Senning procedure, or a Mustard for that matter, (the second part of Connie's switch operation) and it is likely that it will happen again. If it happens every few years it is something that we can kind of live with. If it would happen again in less than a year, we will need to put him on a strong drug called amiorodone (sp?). It has a lot of side effects potentially, but the other drugs that are typically used, like beta blockers, are very ineffective on kids like him.

Our prayers have been answered. We seriously thought we'd be moving to Children's by the afternoon and by mid next week be back in Michigan facing another open heart surgery. Dr. Bromberg doesn't see any difference in the conduit narrowing from last October's echo and frankly, that is a totally unrelated issue to what we're dealing with now.

Normally, a working AV node would have caught the fact that his heart was trying to beat 270 times per minute but his pacemaker kind of covered up that fact and was letting every other beat through. So on the monitor, it only looked like 135 was his HR. I asked him why it didn't show up on the pacer check we did last Thursday and he reviewed it again, saying Colleen pointed out an area on it to him but it only showed the rapid rate for 2-7 seconds so they thought it just wasn't capturing or something. He's going to talk to the CareLink Monitor rep about how to correct that so that this could be caught sooner next time.

We have been so happy with St. John's and especially Dr. Goel and Dr. Bromberg. Please say a prayer of thanksgiving for these two wonderful men.

p.s. Mary Kathleen asked grandma and grandpa if she could say a prayer for Connie and on her own asked Jesus to please keep she and Connie well so that no one has to worry anymore. She is such a believer and she justs trusts Jesus with her little squinting eyes and praying with all her might for him to take care of us all. She is such a blessing. I came home for a bit to let the dog out and brush my teeth! I'm updating from here because someone was on the computer in the RMH room at the hospital and our iPod is not liking their wi-fi too much. We've gotten some messages of support and thank you for those. They really help us feel not so alone! We love you all!

Get On Your Knees People

Dr. Goel just reviewed the cath and gave us the news we don't want to hear. He is in moderate to severe heart failure. His liver is being affected. He is to the point that he can not leave the hospital and will require IV heart failure medications, lasix and milrinone. Dr. Goel wanted to talk to Dr. Bromberg (our actual card) to decide if he wanted him transfered to the CICU at Children's or just stay here until Monday. He is getting set up for a cardiac cath on Monday at Children's to get a better look. His LV is quite dilated and the conduit is very calcified (has become bone). Significant narrowing and needs replacement. So we're waiting to hear after Monday what the timeline is for another open heart surgery. Then, while Dr. Goel is on the phone with Dr. Bromberg, he remembers me asking about Atrial Fib going undetected because of the pacemaker. He says he's not concerned about Fib, but the two docs think he may be in Atrial Flutter and if he's been in it for several days, it could explain the sudden failure and severe mitral valve problems. Dr. Bromberg is on his way in to interrogate the pacemaker since he's an electrophysiologist and he'll know if it's A flutter. If so, they'll try converting him (might be with the shock paddles) and once he's converted, his symptoms could signinficantly improve and rather quickly. That sounds to me like we could avoid surgery if it's just A flutter! Please pray. We'll update when we know more.

Picu update

Dad got here an hour ago with fresh clothes for mom. Good thing since Conway threw up on her. He's getting his echo right now while he eats a chocolate chip cookie from the ronald mcdonald room and watching tv. Dr. will be here soon to review echo and we'll post mrs then.

ER update

They did a BNP blood test. They like to see it come back below 125. Conway's came back over 7000. Yep, that's 7 and 3 zeros, indicating "severe heart failure." The test is around 80% accurate. The echo in the morning will tell us much more. It's looking like our hope that it was just a virus is fading fast. He's being moved to the ICU so the nurses can keep a close eye on him. Mom is with him.

ER update

Chest x-ray shows some fluid on the lungs. Dr. Goel (dr. Bromberg' assoc) is coming by in the morning. Connie will get an echo done. Mom's staying tonight and dad's going home to take care of Mookie and Belle. Will post when we know more.

Posting from the ER

Our boy has not been himself for the past week. He's been very lethargic with no appetite and much grimacing and frowning. He vomited tonight after eating a pickle and drinking a glass of milk at a restaurant. His heart and respiratory rate are both elevated. They've done an EKG, taken blood and a chest x-ray. The cultures should come back in an hour. They're concerned about a vein in his neck which may indicate blood backing up and the heart not pumping correctly.

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