Today Autumn has once again proven she does nothing easy lol. Autums port decided to stop working this am about 5 & I pretty much lost it. They were able to finally after working on it for a while get it back in semi running condition & we took her down for a dye study. The dye study showed she had a obstruction & so we did a TPA (med to use to unclog ports) on her to see if it worked. It did for a while until we needed some blood then it stopped working again. We had to change her needle out a total of 5 times today & it absolutely broke my heart. Nothing was working finally the charge nurse came in & tried a larger needle & its holding right now but we are not positive it will continue too. The only other option to my knowledge after this is surgery which she just can not handle again. She has barely made it through this last surgery Im really not sure if she can endure it again nor do I think we want to do that to her. We have talked with GI about possibly starting some of her feeds again so we can possibly get her back to baseline enough to go home & not have to be accessing the port 24/7 & get her some nutrition. We are starting the Pedialyte in the am at a slow rate & slowly working our way up. Hopefully, this will help. We also put Autumn back on her home vent today after some complications & a desat to 7 YES 7! She is now stable & ok on it. Apparently, there was a particular setting that was not set in the new machine & it was not breathing for her. So after that BIG BIG BIG scare for us & the hospital we got Apria out here who fixed the problem & she is stable & doing ok on it with her higher settings but her blood gas is still a little high. However, I have been doing some research & Im hoping I may have found a possible solution that wont hurt to try for Autumn & that is upgrading her vent from the Trilogy 100 to the Trilogy 200. There is a extra part on there that may be what Autumn needs to help maintain her leak & her gasses. Im going to talk to pulmonary tomorrow & see if I cant get it for her ASAP to try or at least a circuit bc CHOC has them here until we can get the machine to Autumn. So hopefully the Pulm dr will be receptive. At this point we have done everything else & it dont hurt to try. Otherwise, our day was ok. My husband came with all my other kiddos & brought me some breakfast & took them over to the Ronald Mc Donald House for Thanksgiving. The nurses here also gave me a plate of Thanksgiving food which was really nice of them to do & a friend of mine as well brought some so Im good for my food for tomorrow lol. Even though it was a rough day I just kept reminding my self of all the thankful things in my life but today have to say i was NOT thankful for failed ports lololol.
Posted on: Fri, 28 Nov 2014 07:07:33 +0000
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