Well I am officially 1 week post surgery and almost 1 week being back at home. Man it feels great to be a "normal" person again.
So this week was my visit with the Wound and Ostomy care nurse, Lenore. Well she showed up and we spent a good while talking about my surgery and getting a medical history on me. I should have known there would be an issue with her when she could not figure out how to turn the brightness up on her tablet the company provided her with so she just wrote everything down. She then informed me that she would need to see me 3 times a week and that I would have a co pay of $30 a visit ($120 a week). Now, we were told that this service was completely covered by my insurance and I told her that I would mail the check in. Once we got all the formalities out of the way it came time for her to show me how to change my bag and wafer, or so I thought.
It was clear that when she showed up she was expecting someone who was older than I was and not as mobile. She told me that I needed to lay down so she could change the bag. I replied "Then how will I see what you're doing? Aren't you supposed to show me how to change it?" She answered, "Well I guess I could." You guess you could? Gee that makes me feel confident. Luckily for me, I had done my homework and watched a few videos when I was told I would be under going the surgery so I already had the items I needed downstairs for the change. She then proceeded to open the "ostomy pack" I had made for mom & dad in the event I was stuck downstairs and needed a new bag. It included a wafer, a bag, a skin barrier, 3 adhesive removal wipes, a skin barrier wipe, and a single pair of gloves.
She put the gloves on and started to pull the wafer off of my skin. This wafer had been on my skin since Thursday and it was now Tuesday. I told her to hold on a second and to please use the adhesive removal wipes! IT HURT!!!! We then got the wafer off and then she just looked lost. I had the template that the ostomy nurse gave me in the hospital of my stoma and I showed it to her. She tried to trace and cut the wafer on the wrong side. There are 2 sides to the wafer I have. 1 side had the adhesive that sticks to your skin and the other has a raiesd flange that connects to the bag. She was trying to trace and cut on the flange side. Yeah not going to work. I took the wafer, flipped it over and then proceeded to trace and cut the hole and place it on me, all while she just sat there with my gloves on.
After about her being here for close to an hour she left and I proceeded to call the service to let them know about her, to let them know that I did not think it was a good match and that I would like someone with a bit more ostomy knowledge, and that 3 times a week was a bit excessive in my book. The manager sounded a bit shocked that Lenore was planning on coming out that often and told me that I would have a different nurse and the replacement nurse will be coming by on Mondays to check my stoma and incisions.
This is 1 week post surgery
I also had a visit from the PICC nurse on Thursday. That was another crazy appointment, but not as bad as Lenore. Since I have the PICC line, I need to have the dressing changed weekly which normally takes about 15-20 minutes. All they do is come in and replace the adhesive that is covering the line and holds it in place. The service called me and asked me if Thursdays worked and if 10 am would be fine. I told them that was great and would have my fluids done by then. So I woke up early and got started on the fluids, finished up around 9:45 and then started getting cleaned up for the nurse. 10:30 rolled around and I called them. They asked if Steve had contacted me about a time and I reminded them that THEY told me a nurse would be out around 10 and that no one had contacted me. They informed me that he was probably with a patient and that he would call me to arrange a time. He called around 12 and asked if 1:30-2 would be fine and I replied that it would be ok. I then received a call around 1 by Janet letting me know that there was an issue with Steve and if 3:30-4 would work. now by this time I am getting really frustrated with all of this. I sighed and replied, "I don't care what time as long as it gets done today." Luckily she showed up and the dressing was replaced, but 6 hours after it was originally scheduled.
My daily companion
My PICC line. It looks red/orange because we used betadine instead of chlorhexidine since that stuff made my skin irritated and burned on Saturday :(
Now for the supplies...holy cow! You lose your colon but you have wafers, barriers, bags, adhesive removers, skin prep wipes, gloves, and optional bag deodorizers that you have to try and order. You go to the company websites, BUT YOU CAN'T ORDER THE SUPPLIES THERE! You have to go to an outside site to order. Its just a pain in the stoma and I need to get the supplies orders Monday YIKES. And then with the PICC lines, you have liter bags, lines, saline, heparin, alcohol wipes, caps, daily blood thinner injections. Luckily the company who supplies the nurse also sends the supplies so they just call weekly to find out how much I have left over and ta-da Friday the supplies show up at my doorstep :)
I am hoping that this upcoming week will be better with the nurses. Plus I also have my 2 week recheck coming up on Thursday so I am excited to see what the doctor has to say about my progress.