Half the Energy, Twice the Spunk

Well I have been in and out of the hospital for 50 days now. I had my week at home last week which was fantastic, but otherwise it has been a long haul.

Today was a quiet day for me, but a busy one for the doctors. Lots of plans were laid and we now have a course of action. Having a Plan is tremendously helpful with stress levels for me, so I am happy with this.

The plan is at 8am I go downstairs to have a Vas Cath placed in my neck - this is the large bore central line (goes into my heart) that comes out the side of my neck - I had it in september. it sucks. but they need it to do the plasmapheresis which gets rid of the antibodies that are attacking my nerves.

they will use this line for TPN (IV nutrition) starting tommorrow night. I suspect they will start plasmapheresis treatments either tommorrow or Saturday.

Next week sometime I will go back to the OR to have a Tunneled Broviac central line placed which will go into my chest below my collar bone, tunnel under my skin to my neck, where they will thread it into my large neck vein, and down into my heart. This will be a TPN line that will stay there permenantly and will allow me to go home on TPN. it will look like a large IV coming out from below my collar bone - it's a 'nicer' option than the PICC line in my arm as it is under my clothes, and less likely to get infected, and easier for me to use as I will have 2 hands. I'm looking forward to this line. Once I have it the Vas Cath will come out (yay!) and life will go on.

Discharge home on TPN will take some time. 2-3 weeks is the standard, but they are hoping to get me out closer to 2.

Home TPN is complex... I will be hooked up to the IV pump 12 hours a day (6pm to 6am), and will have to deal with caring for hte central line. but i will be HOME so it will be worth it.

The risks are serious - long term use of TPN can damage the liver, and is generally not 'healthy' though it is healthier than starving so it's not a difficult choice.
The risks of a central line are serious as well - with the line in place, anytime i get a fever is a 3 day hospital admission to rule out sepsis... this could get crappy if i get fevers - but thankfully fevers are not something i get often, even when i am sick, so hopefully this will not be a regular occurance.
Sepsis is obviously a scary risk - but they will be watching me very closely with regular bloodwork to watch for signs of infection, so hopefully we can avoid this as well. or at least nip it in the bud if it develops.

The hope is that Mayo will have some options to get me back on gut feeds and off the TPN. They are going to put a push on that referral and hopefully get me there this month.

Dave and the boys are doing ok - we have lots of help from family with caring for them and getting them to school and home and we have some savings tucked away that we have been using so Dave can take additional time off work when needed - thankfully his employers have been very good about letting him take this time off.

Many people have been asking how they can help - if you want to help out either physically or financially, please email me privately at kschellenberg@mts.net - there are several options that family members have been arranging (from a savings account for medical/transportation costs, to an account at a local resturaunt for take out, to laundry/housekeeping costs, etc) for different ways of helping our family - we don't expect anything but we appreciate all the support and help that has been offered - we have been overwhelmed with all the support we have recieved the past 2 months - we are very blessed with our family and friends - thank you everyone.

On that note I will call it a night - thank you again for checking in - I will update tommorrow after I am awake and functional after surgery. Looking forward to getting this show on the road. Again.

Keely