TPN-one week in

 My work station in my room and the white bag of nutrients I get every night for 8 hrs.

On Tuesday,of last week, a lady from my church drove me the 45 mins to the hospital and stayed with me for the day surgery.  After a day with her I'll say she's a new friend.  Being able to connect, talk about our desires for more of God and the Holy Spirit in our lives/families/community and share some of our struggles together, and of course praying together (while I waited to go into surgery) refreshed me.  That coupled with the many prayers on my behalf, I experienced PEACE.  True peace that comes from the Father. 

I came out of surgery to find out that they had attempted to put the port in on the right side but were unable to so they had to put it in on the left.  They had thought they might have nicked my lung but the x-ray proved otherwise, thankfully.  That night I started TPN for the first time.

All the training sessions later I still felt overwhelmed trying to make sure I kept things clean and sterile in order to make sure I don't have any infections, clots, etc.  Thankfully I was able to take some videos during our last training session so on the first night my hubby played the video beside me while I tried to slowly figure it all out.

I am getting much quicker now at hooking up at night and unhooking in the morning.  I have yet to attempt the gripper (needle) change that will happen once a week.  That's too hard to wrap my head around stabbing myself with a needle.  So thankfully this Thursday when I go to get my stitches out they will also change my gripper. 

Many people have asked how I am feeling.  I guess they, along with myself, thought I'd feel really good on TPN.  To be honest it's been pretty brutal.  I have neck and back/shoulder pain (later learned that muscle in the front was cut to insert the port and that stress and tension has affected the muscles in the back ) so sleeping has been difficult.  I experienced nausea, a horrible headache for a number of days, exhaustion from not sleeping well at night.  Normally I was up once or twice a night before TPN.  Now I am up some times almost ever hour and a half or 2 hrs.  The bags under my eyes have gotten bigger and puffier and my capacity to care for myself/home/kids, etc has been minimal.  I am thankful for the few meals that were brought this week and for friends and family who have helped out with the kiddos and rides, etc.  Recent blood work showed my phosphate levels are too high which may be the reason for my weakness.  So now I await more TPN bags that will be delivered without phosphate this time and then I need to get my blood drawn up next week to see if those levels come down.  I wish we lived closer to a larger center to get blood work.  Usually it's a 45 min to an hr drive to a lab that can do this type of blood work for me.  And my nurse informed me that some of her clients feel nauseated on TPN and she hoped I wasn't gonna be one of them.  I can only pray that things will get better from here on out.

When it is easy to see all the negative I am trying to find things to be thankful for.  It's one way I can try to be an example for my kids.  I am trying to teach them to not focus on just the negatives of their days but to list of the positives too.  I am thankful for the caring medical staff team I have.  What a gift!  I am thankful that yesterday was better than the previous week and even though today I am not feeling amazing I am feeling better than when I was at my worst last week.

Thank you to all of you who have been praying for me and my little family.  I am forever grateful for you.