Mother's Day felt significant too. Last yr on Mother's Day it was my first day I was really able to get out of the house and go to the waterside with my family, free of drainage tubes, catheters, etc. I only lasted an hr but I went out in an attempt to spend time with my little family and to create memories. This yr we were able to go to a neat little mini golf location and have fun playing golf together. Even though I didn't feel amazing that day I just really wanted the day to feel normal for my kids.
On May 15th I finally met with the GI specialist I had been waiting MONTHS to see. It was a hard conversation knowing that we had tried all we could to help me gain weight so that the next step was TPN (Total parenteral nutrition (TPN). TPN is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth.) So since then I have had 2 of 8 training sessions that I need in order to learn how to sterilize and set up a work station, all the medical supplies I will need to order from Calgary, how to clean and change the dressings, how to insert the needle and clean the port I will be getting and how to set up and unhook the TPN. Eventually I will be fed for 10 to 12 hrs at night.
My first training session had me in tears. I walked in to the little room and saw this dummy on the table. I had to decide if I wanted a port or a tunnel line. One would mean I could never remove it and I couldn't swim in case I would get water or sand into it. The other meant a longer day surgery where the port would be inserted into a cavity that will be formed by the surgeon. It means that once a week I can remove the gripper (needle part that sticks out and the tubing) for 12 hrs and attend the beach with my kiddos. Both of these options have risks like infection, blood clots, etc. The TPN can cause my bone density to decrease and it can also cause liver or kidney failure. They are also concerned about something called, "re-feeding" which I think I understand means that right now my body does know how to digest (just struggles to absorb the nutrients and runs through too fast) however in the beginning I will be mostly on TPN and not eating food so their worry is that my body might forget how to digest. So I will be having to do a lot of blood work fairly frequently to monitor the liver and kidney and my blood levels.
I need to sanitize a fridge downstairs that will be just for my TPN (I think I understand that I will have about 2 weeks supply in there at a time). I need to sanitize my bedroom and bathroom and set up a work station to store all my medical supplies and to be able to change my own bandages, give myself the needed needles in my port and hook up and unhook the TPN. The hope is to get me from 84 lbs to 100 lbs. So at this point I do not know how long I will have TPN for. I am guessing months to a yr or more. This will take a lot of adjustment for me. The thought of having another day surgery scares me. My brain has slowed down a lot in the last yr from the 5 times I was put under for procedures or surgeries, from the chemo and just stress of the last yr and perhaps from being in forced menopause. So I do feel a lot dumber or slower in my processing and a lot quicker to get stressed(thus I hate city driving all the more). Though I am underweight and take handfuls of meds a day I have figured out how to manage but now getting TPN means readjusting to life and learning all over again how to create a new normal for me and my family. And I also am aware that I will need to really work on my mindset so that I don't get discouraged but see this as a took being used to help me gain the needed energy and health to get stronger and be a better mom/wife that my family needs.
On June 19th I will get my port. On June 14th or so the TPN should be arriving at my home. We were hoping to head up north for July long to see my family but I am not sure how that will look if I have this TPN now. One day at a time. In Matthew the Lord reminds us to not worry about tomorrow for tomorrow has enough worries of its own. So I need to take it one day at a time. And Romans 12:12 stood out to me twice this week, "Be joyful in HOPE, patient in AFFLICTION, faithful in PRAYER." Father please fill me with renewed hope, with supernatural patients for myself, my circumstances and for my family and the needs around me when so often I have little strength to even just care for my own needs. And please help me to be faithful in my prayer life. I know from experience when I focus on the needs of others or pray for others I can more easily take my eyes of myself and my circumstances.
The kids continue to adjust to life here. They would give anything to move back overseas. To be with their friends and those who were like family to us there. My son is enjoying baseball and it's been fun to see him growing and improving in a sport he longed to play for yrs but never had the chance to till now so he does have some catching up to do. The kids enjoy having a yard after 5 yrs of living in an apartment. They are making use of the free second hand trampoline they were given. I am enjoying watching my little garden start to grown, hearing the birds singing in my yard and having space for my kids to play in. My husband has been busy at work, helping to coach my son's baseball and then with church related duties like ministerial meetings, youth pastor search committee or preparing for June 10th when he will be preaching so I have not seen much of him these days. Baseball is fun but makes life more busy and my poor brain is already so overwhelmed at all the training, things to remember and setting up needed to get this TPN started that some times I get overwhelmed when I see all the things needed to be done in the house and on the yard and when I see the calendar filling up with different appointments and activities. So this morning has been nice to have a few hours to myself to blog and reflect.
Though I really am NOT excited about what's to come this month I am choosing to see the Lord at work as I have had the opportunity twice so far to share parts of my testimony with my nurse who is doing my training. The one day she asked questions and sat and listened for almost a half hr. I know that the Lord is taking my "story" and giving me opportunities to share about how He was/is faithfully walking with me through all of this. And my desire is that I can give God glory and praise for Who He Is and for His power at work in my life...especially when I am weak.
