July 20, 2010 - 911/Back in the hospital

Caden struggled for a few hours very early Monday morning. By 3:00 am I noticed some changes in his breathing. By 4:30 am it seemed to get worse. We called Children's Hospital in Milwaukee and the cardiologist fellow on call after hours was going to call back within 15-20 minutes. Within that time period Caden's breathing became even more short, spasmed, and irregular so we called 911. I grabbed my purse, and ran out the door. Ambulance took Caden to Good Sheperd Hospital in Barrington, IL, and David followed in his car. We arrived, they stablized him, then Milwaukee's transport team came to pick him up and ambulance him up to Children's in Wisconsin(about a 2 hour drive). Children's took blood, ran cultures to try to figure out if he was in heart failure or it was something else. Because Caden's Oxygen saturations were fluctuating so much sometimes down into the 60's and his blood pressure was high 120/50, 130/70 they needed to observe him so they admitted him. We have never seen Caden's breathing like this, so it was obviously scary not to mention what we had to go through just getting up to Milwaukee.

Perhaps David can elaborate on the other details but our experience with the ambulance and our local hospital was NOT GOOD! You shouldn't have to spend 6 minutes explaning to the paramedics what the construct of the heart is in your driveway, and that his oxygen sats are normally in the 80's and that was "normal" for Caden. All in all, we learned a lot, and what we would do differently if we had another emergency. Thank goodness I had a list of all his doctors, their numbers, medications, etc on a sheet on the fridge that we just grabbed. That saved a lot of time as we were flying out the door. It was extremely helpful but we did realize other information we should have on it from this experience. I know we have other "heart" families that read our blog so to everyone who has had to deal with local ER's and not a Children's Hospital have contact information very handy as local ER's are not always comfortable with CHD kiddo's like this, and quite honestly sometimes they just don't know what to do. They don't see many children with this statistically so it makes sense, it's just frusterating for us. Thank goodness David was with me and able to be my sounding voice when I was just frazzled and ready to do anything to get his breathing better. David was forceful in telling them we must call CHW and talk with Caden's doctors. It was quickly decided Milwaukee was coming down to get him. THANK GOODNESS!!!

What has happened in the last 24 hours. Heart failure was ruled out. Although his BNP number (a marker that can indicated heart problems) was elevated to 58 from a previous 9 (about a month ago) this was still in the "normal" limit. We are still waiting on some cultures to come back for various viral infections. Because he is being "tested" for these contagious viral infections we are in isolation (gowns, masks, can't leave our room etc...) to avoid spread of potential airborne viruses to other kids. We highly respect this as we have been on the flipside knowing how important it is to keep already sick kids away from germs, but it is very hard to stay in a room without leaving). David and I stayed with Caden in the room last night as he was inconsolable without us. He was acting more himself today, his breathing is better, but his blood pressure is still high and he still has quite a few dips in his saturations so he gets oxygen as needed. They are tweeking his captipril heart medication which can cause significant blood pressure changes so as they increase his dosage he can be monitored to see if this helps. If it is something viral, there probably isn't a lot we can do. It' just scary that if this is the case (a virus) that he was affected so quick and so fast. There has also been more discussion around his vocal cord and the damage/stridor potentially causing some breathing difficulties. We aren't sure how long we will be up in Milwaukee but will have a better idea probably tomorrow after more tests come back.

I drove home tonight as I have an OB appointment for baby #2 in the morning then I'll drive back after my appointment to meet up with David and Caden. I am very thankful to be sleeping at home (as hosptial room sleeping is non-existant). I'll catch up on my sleep to relieve David when I return as he definitely will need it. It is very hard to keep Caden in this crib, connected to so many wires when all he wants to do is be down and walking and playing. Sorry we weren't able to post earlier...they wouldn't let us leave to use the computers, and our phones were both nearly dead and we didn't have our chargers. I'm grabbing more clothes, and some things to help us out for the next few days in case we need to stay another day or two. Otherwise we are doing fine....will be happy to be home soon. We will keep you posted. Love to everyone, and thanks for the prayers~ Melissa