Wednesday, May 27, 2009 Today's Visit

We went to see Shailee today, and she is doing ok. they did a 12 hour ekg yesterday and right after we got there today they started attaching all these wires to her tiny little head b/c they were and still are doing a 24 hour eeg with video to rule out seziures. they also did an eye exam today and the eye doctor told us that the nerve that goes from the eye to the brain is smaller then it is suppose to be, and it could grow eventually or not, she could have great vision to poor vision, it is just another one of those we will have to wait and see when she gets older types of things, like pretty much everything else it with her. they also started her on meds for reflux, which i mentioned to them like a month ago and they acted like i was crazy and she didn't act like she had it at all, guess i was right after all. we talked with one of the lnp's today as well and she pretty much told us that shailee is always going to have some degree of pnuemonia due to the secretions and due to her not swallowing! other then that the surgeon was there today and talked with us and they have found that they are not going to get that 4 to 6 week window that they wanted since she does have the secretions, so they are talking about doing the trach surgery as early as this friday, or next week sometime, but we won't know for sure until tomorrow i would guess. they are not going to do the g tube and ompalecele surgery at this time b/c they don't feel that it will be safe for her due to the pulmonary issues that she has since the organs would be pushed up into her body which could cause pulmonary hypertension, so they are going to wait on those surgeries for a while longer. but she said that if all goes well that after the trach surgery she would still get to come home but she would have the type of feeding tube that she has right now, which is one that actually goes in her mouth and down her throat. i didn't take any pics today as she was already very upset from the eeg and the eye exam, she got so upset that they had to bag her to get her oxygen level back up so i didn't want to mess with her anymore, b/c she doesn't like the flash very much either and it is too dark in there to take pics without it. i will update more on her as i know it.