First port access!

I just got my port accessed for the first time! The home health care nurse came out today and accessed it for me. She was really nice and explained to me what she was doing and how to do everything. She said I was the most interesting and complex patient she has had in a long time! I get that a lot from people it seems! Eventually I will be able to access the port on my own, but that will take a while for me to learn how to do it and feel comfortable doing it independently. It will also be delayed with my major surgery coming up in a couple of weeks.

The delivery company dropped off the IV bags, IV pole, needles, and all of the other supplies last night to my apartment. It was extremely convient and they were very nice! We can adjust the order as we figure out specifically what I need. The nurse got me all accessed and we got a great blood return on the first try which means my port is working very well. I am now running the saline solution. My doctor wanted it run over between 2-3 hours. The problem with this is that the line that the supply company sent me that hooks me up to the bag of fluids only adjusts to a rate of 250 ml/hr. Well since each bag is 1000 mL, or one liter, this isn't fast enough! We just adjusted the dial to go past the numbers, but it still will probably take longer than 3 hrs. We will have to ask for a different line next time they send me supplies. We are hoping this will help to stabilize my heart rate and blood pressure and keep me from crashing. Right now we are scheduled to do the infusions twice a week and we can adjust it from there.

This is a picture of what my port looks like when it is not accessed. There are two incisions where the tape is and then the port is self is the lump under the bottom incision. It is not overly noticeable and hardly bothers me at all. The yellow and greenish tint that is around the port is just bruising from the surgery. I bruise easily with my connective tissue disorder (EDS), but it should go away within another week or so.

This is what the port looks like when it is accessed. The bandage is to keep the needle in place. The black wing looking things are part of the needle which is a special kind of needle used with ports called a huber needle. The blue and white dial I am holding is the dial I was talking about to adjust the flow of the saline and the white plastic piece is a clamp to stop the flow of saline when I disconnect the line.

I was able to pick up my cervical collar that I will need for after my fusion surgery. I picked it up before I went out of town for the holiday so it was very nice to have in the car! My neurosurgeon wants me to wear the collar for long car trips, on the plane, and whenever I feel I need it for symptom reduction. It is not the most comfortable thing in the world, but it really does help.  One issue I was having is that my chest was very sore from the port placement, so I couldn't wear it too long. The other issue I had was that my neck muscles are so tight from the instability that I can't wear the collar for more than a couple of hours without my muscles spasming from the pressure. I took some muscle relaxers and this really helped. I will post a picture of the collar to give you a better idea of exactly what it is later on.

The issue with the Chiari Institute and my insurance got figured out. For some reason the one representative that the lady I have been corresponding with spoke to told her that he couldn't find my doctor, when everyone else can. We have had three other people from my insurance company check and they all say that he is covered so we should be good! I also got a call and I have a rotational CT scan scheduled for right before I go for a consultation on December 16.

I still have not heard back from neurologist about my blood work results from the blood panel I had run a week and a half ago. I will have to re-check in with him and see what is going on with that. My pre-op checkup with my general physician got changed to next Monday so I will update after that appointment.