Making the decision to have a child – it’s momentous. It is to decide forever to have your heart go walking around outside your body. ~ Elizabeth Stone

Tuesday, June 17, 2014

Home sweet home!

I realized, after a friend pointed it out, that I had not updated the blog to let everyone know that Elijah came home. We had an intense, but short stay at CHLA. Elijah did not like staying the night and he gave Dion a really hard time. No one slept. But once the doctors came by and did their rounds in the morning, they gave us permission to leave! Elijah is doing well, although I am a little unsettled by his breathing. He still pants when he moves around and I thought that would be better after the cath. Hopefully it is just a side effect of being intubated and it will get better with time. We have a follow up appointment with Dr. Sklansky tomorrow. Wish us luck!

Friday, June 13, 2014

Post Cath

Elijah is out of the recovery room and in his room. He is sleeping comfortably. They ballooned his stent and coiled quite a few collateral arteries. For some reason his body fights the coils and figures out how to go around the coils, so they had to add coils to arteries they had already done in the past. He still has a bunch of collaterals, most of which are too small to coil. The doctor described them as a nest. Elijah has a major one that is also supplying blood to his stomach, therefore it can't be coiled. Overall, it seems like things went well and we are on a positive path. His pressures were good and he still looks like a Fontan candidate.

Pray for a good night and discharge tomorrow!

Cath Lab

I hate days like this. I hate getting my baby up in the middle of the night. I hate driving in the dark to the hospital while he cries in the backseat. I hate going to admissions and signing all the paperwork. I hate the multiple waiting rooms they filter you through as they get vitals and ask the same questions over and over again. I hate trying to keep a scared little toddler distracted. I hate trying to smile through everything I hate so that the scared little toddler thinks everything is okay.  I hate taking him to the surgery room and handing him off to the nurses. I hate waiting in a silent room for someone to come in and give me an update. Ugh.

And yet through all of my hate, I do smile. I do laugh and play and sing. I do because I have to. Because that is what that little boy needs. But man oh man is it hard. Please keep our little boy in your prayers today. He went into the cath lab about 20 min ago (7:30am) and he will most likely be there for the next 7 hours or so. He will be spending the night at CHLA.