Interesting Thursday

Today wasn't such a great day for Julianne. It started last night when her lips looked less pink than normal. They checked her oxygen saturations and, sure enough, they were lower than normal...around 80%. Usually hers run mid-80's to mid 90's. All night she was checked and never got above 82%. Dr. Young said that we want them to be right around 80%. If it was too high that would mean her heart was working too hard. Too low, and something is out of whack.

The nurse brought in Julianne's Amiodorone for me to give her and a began giving it to her by mouth through the syringe. She wasn't taking it as well as normal...letting it roll out of her mouth, breathing heavy and falling asleep. Usually taking her meds is not hard work for her at all. I called the nurse and asked her to check Julianne's saturations again. This time it was 75% - 76%. They then ordered a chest x-ray to make sure there was no fluid on her lungs or that she hadn't aspirated any vomit. They also wondered since she hadn't urinated much last night if she wasn't retaining fluid. The x-ray showed some fluid in the vessels of the lungs. Its not fluid like pneumonia type fluid, its just in the vessels. It not not show any vomit in the lungs either. They gave Julianne her morning dose of Lasix (the diuretic) and upped the dosage to twice a day to get rid of some additional fluid. Then she had an echo done. The echo showed good heart function, actually better function and a more regular rhythm than when we first arrived here. Her shunt is still working great too!

Dr. Young said it also a possibility that she aspirated a small amount of vomit and that caused her oxygen saturations to drop.

Sooooooo...they stopped her feeds and put her on IV fluids to prevent any further vomiting and aspiration. Then they changed Julianne's NG tube to an NJ tube. The difference is that an NG goes into the belly, but an NJ goes into the small intestine. They did this so that they could give Julianne continuous feeds and prevent any further vomiting. The plan is to put her on continuous feeds tomorrow.

I asked how long it would take for her saturations to go back up if the extra fluid was the problem and she'd urinated several times since this morning. The nurse said she'd go ahead and check it now to see if they've gone up. They did! They're already back up to 84%! I was relieved.

I know I will spend a lot of time with Julianne tonight as its hard for her to sleep with no food in her belly and just IV fluids. It gets to be tiring when that happens, but I just keep reminding myself how precious every second is.

Please continue praying for Julianne. We hope to know something soon about when we'll be going home. We're thankful for everything God has given us, especially for Julianne and we're looking forward to sharing her with all of you.