This is music time with Daddy. If you look close you can see the cord from the ipod. Seven sat completely still when the music was on! I know what you're thinking, "Of course he looks completely still. He could be all wiggly and I wouldn't know because it's a photo and that's what photos look like. Still. She could be saying anything untrue. Why am I even reading this?" But I don't lie. He was still. Case closed. And don't question me again.
I'm sorry. I'm awful tired and have to condense two days. But I gave you an extra one yesterday so I want to hear no complaints! Yesterday was a little rough. Seven was acting very ill. He spiked a fever in the morning but ditched it during the day. He had trouble emptying his bladder. We had to massage his lower tummy to help. He seemed to be in a good deal of pain. It took quite a bit of Ativan, Morphine, and Chloral Hydrate (his personal favorite.) We met with a new neurologist. The old neurologist was on her last day of rotation when we met. The new neurologist offered a differing opinion from the old one. The new one said he had no idea what could happen. He also said it was possible the white matter could change. He had no other information for us, had never seen a child this young with this type of change, and had also never seen a sodium level of 202. Basically no one knows what Seven will be like because no one has ever seen a case like this before. He pretty much said we are just going to have to wait and see. I politely told him, "Thanks for nothing." (I swear I said it in a nice way.) Wait and see is the theme of this visit.
Ocean visited Seven on Thursday. The Child Life Specialist (who is a child psychologist) brought a craft for us to do together. We made 4th of July hats out of pipe cleaners, paper, confetti, tape and glue. Ocean loved it. The Child Life Specialist also brought me the mother load of all scrapbooking supplies and guided me along the path of making a book for Ocean. I titled it "Ocean's Seven" and it talks all about where we've been and how we've been helping Seven. Every page has a picture on it and the book ends with lots of photos of her extended family. We had the book laminated and bound. It was a great idea (thanks Jennifer!) and I think it turned out beautifully.
Jennifer also brought by several wonderful books and Ocean and I enjoyed some reading time.
Ocean wasn't stoked about the paparazzi.
Seven was much more comfortable on Friday and looked a lot better. Its hard to tell beneath the tape on his face but we swear he is smiling at us when we get close to his face and talk. We still kept him sedated so he could "rest up." We found out that pseudomonas is growing in Seven's lungs and bladder. This is a very common bacteria found in the hospital. Seven switched antibiotics to one that covers this and he should be eradicated of it soon. During rounds we decided that we will try to extubate as early as Sunday but only dependent on how Seven is doing. We started Pulmicort, a steroid delivered via nebulizer, twice a day to strengthen him. We also decided to do another round of IV antibiotics about 24 hours out from a planned extubation. The EEG is now scheduled for Tuesday. An EEG will show the best results if Seven has a very low amount of sedative in his system.
And through it all, we still retain our sense of humor.
No comments:
Post a Comment