Erin continues to make progress. Her x-ray (which they take at 4:30 am so that Jeff can see them first thing when he arrives at 6:30) shows that the left side effusion is gone, and a small amount remains on the right. Tomorrow's x-ray will determine whether she goes off intravenous Lasix and moves to the oral form. If that is the case, she may have only 2 days left here. In any case, she will spend more time here at Children's for the fluid buildup than she did at Mayo for open heart surgery.
Once Erin is home, she will remain on oral diuretics for a period of months, being slowly weaned off. I had no idea what we were in for, but if we avoid the chest tube it's worth it.
The real issue in all of this is whether the simple (it's all relative) ASD fix is sufficient, or whether her heart's right side won't be able to handle the increased blood flow through the chamber now that the hole is closed. If so, then she will need the rest of the originally planned surgery. I can't even allow those thoughts to register.
Amazingly, she remains in great spirits. Yesterday, her Aunt Mo, Uncle Mike, and cousin Megan along with Aunt Colleen came and visited. Erin loves her family, and is always thrilled to see them. She had a good night sleeping, with one exception. The exception came when her lab tests showed reduced potassium, a common side effect of diuretics. One of the effects of potassium is that it helps the heart muscle work, so for Erin it is critical.
Potassium given intravenously is unpleasant, and can burn as it goes in through the IV, in some cases quite painfully. This was exactly the reaction Erin got after they hooked her up to the IV, crying quite hard over the pain. The nurse explained that she had even changed the drip from a 3 hour regimen to a 4 hour regimen to minimize this as much as possible. The alternative was to take it orally through an extremely large syringe. The nurse warned me that it would be foul and very unpleasant. Of course, as things go in a hospital, it took forever for the oral dose to show up, and by the time it arrived Erin was fast asleep. She awoke about as happily as I would have from a sound sleep to find an me trying to give her an extremely foul medicine. We ended up literally having to hold her down and restrain her while I gave it to her. Because it was so large, it took numerous tries to finally get it all in her. I feel like I will be apologizing to her for the rest of my life for putting her through that. It was that bad. Afterwards, she curled up on my chest on the bed and went to sleep. We were both spent.
Mayo had a much better way of dispensing potassium, mixing a powder form in chocolate pudding. Dr. John Costello made that happen for Erin, so going forward we won't be having a repeat of this nightmare. The balance of the night was unremarkable, and Erin slept the night through with the exception of waking for labs and x-ray at 4. I wish I could have slept.
Today, our neighbor Liz came over with her 14 year old daughter Isabelle, whom Erin adores. Isabelle brought nail polish and did Erin's toes. Erin feels very girly and pretty. It was pretty funny watching her get "saloned" in the ICU.
Aunt Colleen is here tonight and we have ordered Italian food from a favorite restaurant. Sheila has night duty. It's hard to think about spending the entire weekend here, but there is no alternative.
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