Oh yeah. To try and figure out why C is not eating. To see if there are any anatomical gi issues and/or seriously bad reflux. And well, that just did not happen today. I keep hearing that the very definition of insanity is to do the exact same thing over and over and expecting to get a different result. I think at this point...Kevin and I are completely past insane.
However, C is doing well. She did fine with the anesthesia. She actually did not need the full anesthesia (the paralytic part) and really needed just the heavy sedation. The anesthesiologist did not even intubate her this time. Just was not necessary. Very good thing. We did see the GI doc after the scope and what he showed us is that she is basically fine. So. Great. He did take 3 or 4 (not too sure as I was about to pass out from hunger by this time...get to that in a moment) tissue samples that he sent out to biopsy. Takes about 3 to 5 days to get the results back from pathology. He was explaining all the different things he is testing for...again the hunger thing so I did not catch all but did hear allergies and some other stuff. He does not have any answers right now. Awesome. And even better...he can't tell me what happens next if her GI track is in fact just fine like he thinks (no blockage) and there is no real reflux (she is currently showing no signs of acid damage or ulcer or anything). Again...awesome. So, it seems like we are at the point of ruling out what IS NOT the problem. Kevin finally got to experience my pain when the GI doc said to just keep doing what we are doing...I do think Kevin even mentioned that he wanted to strangle the doc. Hee hee.
C was her usual happy self all day. Even with the 2 hour delay because of really ridiculous (I am tyring to be nice and not call anyone names) scheduling people. First, she was scheduled for her procedure at 12:30pm. Really...a 6 month old baby not to go until 12:30pm. Come on. Second, as you know C is a very hard little one to get an iv into. We told the nurse and everyone else this. You would think we would know at this point...you would think. As usual they don't listen. The iv team came up at noon to place the iv. Really? 30 mins before the procedure? Are you kidding me? Stuck her twice and called it a success on the second one. I was telling them it was not right. She does not keep screaming in pain after the iv is placed if it is correct. Again...no one listening. I even told the anesthesiologist this when we finally saw him. Guess what? I was right...again. The iv was not right and she has a different one. Fortunately she was already sedated when the anesthesiologist placed this iv. He said he would sedate her first and try the one iv and if it did not work would place a new one.
Two months ago I did not think there was a better place to be than All Children's Hospital. I was so super happy with our experiences here. I can tell you, after today I think I will be going to St. Joe's in Tampa from now on. The complete and utter stupidity that we have had to deal with today would test the best of people. From being scheduled so late to start with to then getting here and being delayed two hours why the figured out how to get a cardiac anesthesiologist because that is what C needs to the miscommunication to the leaving us to sit for an hour and a half with no communication with what is going on. Complete and utter stupidity.
I am still very happy with the care C is getting. The nurses are awesome and I do love all C docs. This hospital though...I have some choice words for the admin here.
I really did want to post earlier and let everyone know what was going on but I just could not get to my computer until now. Shoot. I JUST got to eat "lunch" at 4:30pm. Grrrr. Stupid hospital.
Anyway. C will be here until tomorrow afternoon. She has the ph probe placed and we will be monitoring it for 24 hours. GI doc will interrupt results once he gets them. She is not going to the CVICU. Yippeee! That means we really will be out of here tomorrow. No intensivist sitting over our shoulder telling us everything we are doing wrong. GI doc will get back with us around Monday or Tuesday next week with all the other results. He said what he saw today is only about 50% of the picture so just waiting on the other 50% to see if there is anything there. C is awake and fully aware. Kevin is giving her a bottle as I type this. We will see just how much more she likes eating with having a tube down her throat...ya know on top of all the other reasons she just loves to eat...goody.
Thank you all soooo much for thinking of us and praying for us today. I think all your prayers are what has kept Kevin and I from taking someone out. Patient is a virtue and one we are still learning. I am so very grateful for each and every one of you and all of your kind comments. We really are blessed to have such amazing family and friends.
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