Sounds like this has been a great week for Tyler. Over the last couple of days, Tyler has ramped up his feedings and is no longer on any IV nutrition. He has also weaned down on his dependence on high-flow and may go off it completely tonight. Today Tyler's team decided to see if he could maintain his own temperature by leaving his bubble bed open for a while. He did so well, I hear he's in a big boy's crib. I haven't see it yet but I believe it's an open crib and he is now bundled up. They also took him off the drug to reduce the fluid production in his head today to see what happens. Tonight will be his last dose of the antibiotic and his IV can completely come out. If all goes well tonight and tomorrow, I'll see Tyler tube free. (Of course he will still have monitor lines stuck to him.)
When I called in this morning to see how Tyler did last night, I mentioned to his nurse we wanted to see neurosurgeon, the attending Dr, and the Nurse Practitioner face to face after we got the results of Friday's ultrasound. We want to see what every one's thoughts and concerns are and make sure everyone is on the same page with the next step with Tyler's head. I don't think brain surgery should be taken lightly. Trying to piece this together over the phone and quick talks with each Dr. doesn't sound like the right idea to me. When I called this afternoon, Tyler's nurse told me that his ultrasound was moved to today so that the official read would be out on Friday and we could meet in the afternoon to discuss things. I was amazed that they would move things around and to hear that all the Dr's are waiting to hear when we will be available to meet. Again this tells me Tyler is in the right place. We will be heading back to Lebanon tomorrow morning to start most likely the third attempt at surgery for Tyler.
My fantasy dream is that the ultrasound comes back normal and they are getting Tyler ready to ship to SNHMC to get bigger. Does any one have a pipe for me to put that dream in?
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