Update - Monday Evening

Bill stayed with us at the hospital today instead of going to work in Hickory, where there is a conference he was supposed to attend.

Sam has had four high fevers today, each lasting one to two hours. The infectious disease doctor said it's normal to have fever, but for them to last so long is unusual. She also said his right lung sounds diminished and has ordered a chest x-ray. When she sat with him this evening, she said his breathing was labored and was concerned. She is also testing his blood to see if the defibrillator itself has caused some sort of infection.

At one point today, Sam's hands and feet turned a "dusky" color (basically, blue). I was very upset. He started holding his breath during that time too. They called the cardiologist, who came immediately. At the time, Sam was having a fever spike and had about 102.9F. We were using the cooling blanket, but he was shivering too much and we had to stop. The doctor said it is very typical in normal babies to have those symptoms when there is a fever spike. Also, Sam's heart was doing some very strange things and even got up to 193 beats per minute.

After all the fevers he has had today, even with the very worst one, where his fever was 103.1 at the highest recorded time, he never went into a sustained ventricular tachycardia. That means, his heart never beat so quickly that it couldn't be rectified without a shock.

That's good news. No, that's great news.

This evening my Uncle Jack and Aunt Joyce came by right in the middle of a cardiac event. Sam's heartrate got up to 197bpm. He was terribly upset, as were we, and the nurse stayed in the room the entire time. Once his heart slowed down a little, he actually smiled at Aunt Joyce. It was the sweetest thing. I left her with him and Bill and Uncle Jack took me down to the cafeteria to find some food. It was the first time I had been in the cafeteria or away from Sam's bed since we got here. I even had to go down to the first floor and get a badge, because I didn't get one when we came in via ambulance.

So, more ups and downs. I expect we'll have another night tonight like we did last night. Everyone is still thinking all of this through. The cardiologist, the ID doctor, us.
I feel bad for Bill - he's only on his third week of work and he's already missing days. But, I'm grateful to have him. I need his support.

Thank you for all of your support too. We appreciate reading all the posts and talk about them throughout our darkest times during the day. You are precious to us and we appreciate it.

Also, for those of you who are into homeopathic meds, we are all for them but unable to use them on Sam. With his heart condition, we cannot tell what any normal medicine will do to him, but especially one that has not been tested on this condition - which is all of them. It's frustrating, but that's life. Thanks for the advice, Hollie.