More details about yesterday's emergency room visit

Weight check = 13 lbs. 2 oz.

Yesterday Lilly woke up early and sounded congested and her breathing wasn't quite normal. There was a little pause between breaths at times. I spent from 5:30 - 7:30 a.m. pounding on her back and chest and suctioning her nose and wiping mucous from her mouth. It helped some and she seemed to feel better when I did that. But off and on during the morning she made wheezing sounds.

So I tried a nebulizer treatment. That didn't seem to have any effect on her. Hooked her up to the pulse ox and her numbers were OK. Wondered if Lasix would help so I gave her some of that. Then I rubbed Lympha Rub on her chest and neck and sat with her in the bathroom with the shower on hot. Results weren't good enough.

By this time I was feeling almost sick from the constant knot in my stomach. The special "Uh oh what is happening with Lilly! knot." I called my husband to tell him I was taking Lilly to the emergency room. The breathing reminded me of the two times she had viruses, both of which just about killed her.

I packed for the hospital in record time and my son and I rushed with Lilly out the door. She was actually acting normal, but her breathing was still wrong. We headed to a hospital about 40 minutes from here. The one with the children's emergency room and best-PICU-to-stay-at if you have to stay.

Once we were in the emergency room I told them I wanted a chest x-ray done on her and an RSV test. (She's on Synagis, but just in case!) The RSV test came back negative, thank God. The x-ray showed some white spots. As I said in yesterday's post, the cardiologist on call said Lilly was in early heart failure and to re-start her Lasix.

Dr. S, the emergency room doctor (who knew my husband - how great to have a connection!) said we could leave or stay - whatever I was comfortable with. Lilly was smiling and carrying on (today's picture) so I said I would like to leave. That we have a pulse ox and oxygen at home. And that we'd be back if it got worse.

Today I heard from Lilly's regular cardiologist, Dr. R. He disagreed with the other cardiologist's conclusion. (I was amused that the cardiologist on call was "Dr. C" whom I mentioned here. I wonder if he was surprised again that Lilly is still alive.) Dr. R said that her heart is completely repaired and there is no reason for heart failure. He said viral pneumonia will give the same chest x-ray findings as heart failure, but that heart failure will not cause the wheezing and congestion. Lasix won't hurt, but it may not do much. And to please take her back to the ER if her breathing got worse.

I had Lilly on the pulse ox all last night. Her numbers weren't too bad and she slept all night long and until 1:00 today when I woke her up for physical therapy. She still seems a bit congested but her breathing is pretty normal. She seems to be feeling well. Her therapist thought she seemed even more like herself that she did last Friday.

I am glad that Lilly has a pulmonologist appointment tomorrow. Maybe we can get another x-ray or even an echo done to check on things.

Never a dull moment with Lilly!

"Cast your cares on the LORD and he will sustain you; he will never let the righteous fall." - Psalm 55:22