Sorry for the lack of updates since surgery. My port placement went great! I absolutely LOVE my new surgeon. I didnt go back until right around 6:00 pm, thankfully I dont eat anyways so I wasnt starving, but that meant we didnt get home until super late. My picc was pulled once I woke up and we connected my TPN to my port. I am so happy to have my port back! I had my follow up with Urology today. We have scheduled a repeat urodynamics test at the end of October to hopefully determine if my bladder is having pressure issues causing the neurogenic bladder. I had a urodynamics done in Cleveland a year ago, but so much has changed that he feels it needs to be repeated. The results of the test and follow up two days later will determine our next plan of treatment. So many things could be causing this, some big, some not so big. But we wont know until the test is done and we will go from there. I will continue cathing 2-3 times a day until then. I am still on 24 hour TPN. My nausea and vomiting has been worse the past week or so, which causes me to lose more weight. We are really struggling trying to find a balance to keep weight up, nausea and vomiting under control, and keeping everything moving smoothly, not so easy! Thank goodness I have an appointment with my GI Tuesday morning. I have called the past 3 days and left messages with his nurses and not a single call back, so I am very frustrated about that, I at least would like a phone call back. I know it is not his fault, but it is really hard to get through some things when no one will return your phone calls. I wasnt sure I was going to be able to stay home until my appointment, but thankfully, today I am doing better. We have some decisions and other options to talk about on tuesday which could potentially better my quality of life and help me gain weight, but we will see. Right now everything is so complicated and my body is so fragile, we never know if we are making the right decisions so please pray for guidance for me, my mom, and my doctors to create the best plan possible for me and my life. I will keep everyone updated next week after I see GI and we have a somewhat better plan. Thank you all for the thoughts and prayers and to those who have sent cards and packages, I will be sending out thank you cards very soon (:
Posted on: Sat, 27 Sep 2014 05:24:35 +0000
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