TW Medical port and feeding tube

TW medical

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So, tomorrow, we have to go to Chicago to get our port and feeding tube site looked at. Our port is looking red and irritated because the nurses keep accessing it in the same place each time. They have a dime-sized area to work in. We might be allergic to the dressing, the needle or the skin prep. Also, our feeding tube stoma site is stretching which means there is space between the tube and our skin, so if we eat anything orally it drains out of our stoma and even if we don’t, the stomach acid leaks around the tube to! It burns away the good skin, and the tube is in the crease of a scar. It was the only place the radiologist could place it without a surgeon doing it. They told us to pack a bag in case they have to replace our port or do something with the tube. We are also going to see if we can talk to the palliative care team there to see if we can get into palliative care to get better pain meds or pain management as we don’t have any now, and EDS is so so very painful!!!! Thanks for reading if you’ve read this far.

Have a good night everyone. We will be up at 5:30 in the morning.

Ray

medical update

Hi everybody. We had our appointment with our POTS specialist yesterday. We found out that we have autonomic neuropathy, inappropriate sinus tachycardia, vasal vagal syncope and POTS. We found this out in reading our chart. Plus our doctor’s PA told us that the doctor suspected an autonomic neuropathy. Our hands and feet often fall asleep doing nothing. It also affects the temperature of our hands an feet to.

Just more diagnosis to add to pour list.

Ray