How we came to CHO

September 2007, our 3 1/2 week old daughter Alison Grace wasn't 'acting right". She had vomitted in the early morning, wasn't eating well and slept all day. Her breathing was 'off' and her heart seemed to be beating quickly. However, except for the vomitting episode, all of the other symtoms are pretty normal for a newborn baby. After a day trip, I called the nurse hotline to reassure myself that she was OK. As soon as I mentioned her odd breathing (my main concern was her lack of eating), the nurse said to take her in. My husband and I debated taking her to the urgent care center or the ER. I decided (thank God) to go ahead and go to the ER at the hospital I work for, and is just down the street.
I checked in at the triage desk and a few minutes later they assessed her. The nurse couldn't get her heart rate, but I answered all the preliminary questions and sat back down. Minutes later they were shuffling us into a room, handing me insurance forms and putting the baby on monitors. For the next few hours, I didn't really realize what the initial problem was; her heart rate was 280bpm and she was extremely dehydrated.
The doctors and nurses tried for the next 7 hours to get an IV started while a transport to CHO was arranged-later she would earn quite a reputation as a "tough stick".
The diagnosis from the Pediatric Cardiology team was SVT (a super fast heart rate) WPW (a particular type of SVT) and three tumors in her heart. She 'coded' twice in the first few days and got 24 hour one-on-one care for 3 weeks. What started as a not-totally uncommon set of conditions turned into 6 weeks of ICU care as her diagnosis was revisited, medications and dosages were tested, surgical options were discussed, various procedures were performed and yet until the 5th week she baffled them all by displaying atypical reactions to all of her problems. Alison throughout it all, thrived!! She gained weight (a LOT) and was smiling and happy except for when they had to mess with her IV. Finally we were able to take her home with a bag full of meds and with one 2 week revisit and regular check-ups everyone is very positive about her long term health.

We were so blessed

I'll never forget hearing that our local hospital was going to transfer our daughter to the Children's Hospital in Oakland. I didn't even know there was one there. The REACH crew gave us directions and my husband and I drove there at 4 AM. Walking into the hospital was quite a different experience from any other hospital I have been in. We were greeted in the PICU by her nurse and the doctors came by not long after to give us a brief update. For the next 5 weeks, we experienced the most amazing care I could ever hope for. There were social workers and chaplains who checked in with me everyday, a family house right down the street for my husband and daughter, a resource room with computers and internet access, and a helpful friendly financial staff who helped with our insurance questions. The nurses and staff of the PICU were absolutely some of the most caring people I have ever met, as they not only gave fantastic medical attention to my daughter but also helped me get through each day. I spent most of our time there in that hospital chair, leaving only for bathroom breaks and one or two meals a day, so I needed someone to talk to! Questions about her care were answered honestly and in a way I could understand, they took the time to really teach me how to draw her meds and take care of her other needs. I rarely had to ask for pillows, blankets and sheets as evening rolled around, and when I had to leave to be in my sisters wedding I was assured by everyone she would be well taken care of. I could go on and on about how wonderful I found the care at CHO, as I hope my experience will be the only one you are ever familiar with.

Sponsor Me

I will be participating in the 2008 Workday Devil Mountain Run. It is a way for me to start getting back into pre-baby shape, as well as helping a more than worthy cause. Please support me with a donation of $5 or $10 dollars by selecting the "Click Here to Sponsor Me" button. Our efforts will help make a big difference!

I'm also entering the blogging world, so you can track my 'progress' at http://sadij.wordpress.com/