Finally going home!

Well it looks like we get to go home, yay! They wanted her levels to be between 50 and 100 and it came back at 61. :) We are just waiting for the nurse to come unhook all the cords and take out the IV. I think the EP (her specialist) wanted to stop by and see us before we leave too. Now we just need to follow up for weight checks each week to know when we need to up her dose based on her weight. We also need to do another blood draw in a week to make sure her levels are still where they should be. Other then that we have a follow-up in 2 months with the EP down here but hopefully these meds keep her episode free.

Thank you everyone for all your thoughts and prayers, you have no idea how much it means to all of us!

Ready to go home

Well my Daddy and Little Man trucked on down here to come pick us up today when the cardio on duty delivered the bad news. Sweet Pea’s trough levels in her blood were undetectable so they had to up her dose. We are going from 5mg to 7mg and they are going to do a redraw tonight so maybe we'll get to go home tomorrow. I sure hope so, I'm ready to take my baby home already and enjoy her like normal families do! At least they are being very careful and I'm greatful that they are over cautious. The whole point to keep us this long is to make sure there is enough drug in her system to keep us out of the hospital in the long run so for that I'm greatful, I'm just tired of being stuck here. :(

Okay the nurse just came to give some more bad news. Her IV access wiggled it's way out this morning so we took it out and took her off the monitors since she was going to come home. Well since we are staying and don't need high level monitoring they are going to move us to a regular ped room/floor. The bad part is that they want her to have iv access down there just in case. She has such a horrible time getting an IV and it requires at least 5 pokes no exaggeration, my poor baby! The nurse is going to try to negotiate either keeping us in this room so we can avoid the IV or going to a regular room without the IV, we'll see.
Nope, she just came back, they do need IV access. Maybe I'm being a coward but I'm going to duck out for this one, I can't watch my baby go through that again!

Hopefully we get to come home tomorrow, I just want to take my baby home!

Progress but tired

I just had a few minutes and thought I'd put a quick update up. So far everything is going well on the new drug (Propranolol) other than one small side effect, she was having trouble sleeping last night and today. They took her blood sugar today which was 105 which I'm told is great (low blood sugar can be a side effect of the drug) and I found out that her QT interval on her EKG yesterday was considerably shorter then before so that's great news. Tomorrow they plan to take blood and make sure she has the appropriate level of medicine so they can adjust if necessary. If everything continues this well we hope to be home Wednesday and to not have to come back!

Hopefully the sleeping thing straightens out as I'm sure some, if not most, of it is coming from being stuck in the hospital yet again. She's been a trooper though and I got a lot of smiles and coos today which is the up side to her not sleeping. The down side however, is no time to call or email folks or update things here, sorry!

Well I'm going to try to get some rest while I can, will update more later.

Off to the Mayo clinic

We are heading out to the Mayo Hospital this morning; we'll be in for 3 to 5 days. Please pray all goes well and this new drug works.

Getting a second opinion

We went to the Mayo and met with the Electrophysiologist there for a second opinion. The Dr. there has some different view points on medication. Currently the medicine she is on is a newer one. The new Dr. prefers to use something that has been used longer, that has less side effects since it's not as strong, one they have the ability to draw blood and check serum levels and one he feels more comfortable with and since he's been doing this since 1972 we feel comfortable with his opinion. So we are switching our care to the Mayo. The new plan is to admit Sweet Pea to their hospital and they will observe her while they wean her off the Sotalol and onto the Propanolol and make sure all goes well.

Another episode, need faith...

We went for dinner and a play date at some friends house. After Tuesday night's episode we've decided to check Sweet Pea’s heart rate at each diaper change. Around 7:00pm I changed her diaper and her heart rate sounded fine. She was pretty cranky and wanting to eat but not eating much again so I kind of knew something was up. We got home about 9:00pm and put her on the changing table and checked her heart rate again and it was racing again. So off to the ER, another 10+ pokes and the two doses of Adenosine later she was converted. They decided to send us via ambulance back downtown since this was the 3rd episode in 3 weeks. We spent another 3 days at the U of M Children's hospital. They increased her dose of Sotalol again.

The only issue with that is that the other problem that can be caused by this medicine is a long QT interval which can cause torse de pointes, another type of arrhythmia that is even more dangerous.

Basically, the QT interval is the time it takes for the heart to charge in-between beats. For example, when you see someone get shocked on tv it takes time for the paddles to recharge between shocks. In the heart this process occurs naturally and the time it takes to recharge between shocks (or beats in a normal heart) is the QT interval.

The last EKG before we left Tuesday showed a QT interval of 500 to 510 and they said she can safely have one up to 515. So if she has another episode we'll be talking different medications or a combination of medications.
We've decided to go to the Mayo for a second opinion just to be sure we are doing everything we can. Our appointment there is Friday March 23rd, I'll add an update after that appointment.

Please pray that we can at least stay episode free for some time. Her cardiologist said the short term goal is two weeks without an episode and the ultimate goal is to have an episode no more than every 3 months. I just pray that we can get there and fast, I don't know how much more a mommy can watch her baby go through this! God gives us the strength we need; I just need to rely on that now.

Plan of attack

Spoke with the cardiologist and we increased her dose of Sotalol.

Another espisode

Sweet Pea had another SVT so off to the ER we went. Again they had to poke her 10+ times to get the IV in so they could administer the Adenisone and break the SVT. She was at 296 bpm again so very high which makes getting a good vein difficult. Since they were able to convert her back they sent us home with instructions to speak with the cardiologist in the morning.