Right Now

Six weeks ago I had the surgery that placed a jejunostomy feeding tube (J-tube) into my jejunum, the second part of the small intestines.  The hope was that I could increase my nutritional intake via a tube that bi-passed my partially paralyzed stomach.  After 2 weeks of failed attempts, complications, more trips back to the hospital and surgeons office, and further weight loss, it was determined that I would need something more.

Two weeks ago I received that something more in the form of TPN (total parenteral nutrition) through a port that was surgically placed in my chest.  The hope again was to gain weight, strength, and health.

Trying to figure out how to get around with 2 bags, using the port with TPN and the J-tube with formula.

Right now....

Right now I am constantly reminded that I am unwell when I awake with a nauseating headache, swollen legs/feet, puffy face, and a bloated stomach.  Six weeks ago I had so much hope and excitement for what I truly believed was going to be a quick fix.  The past six weeks, however, have been a true test of my strength.  I've cried out in frustration while giving myself sponge baths to avoid getting my port wet because I just want to stand and cry in the shower instead.  I want to feel the water run down my face, cleaning my hair, and stepping out a new woman.  But, I can't.  Not yet.  I am dependent on this TPN to survive right now.  I realize that crying over not being able to shower like I used to is a little thing.  I tend to lose my cool over the little things instead of the big things.  Dishes left by the sink, I can't handle it.  Ants in the kitchen, I'm done.  Shoes left in the middle of the room, I just can't.  But the big items like failing health, not just mine, are things I can handle because I know I'm not in control of it.  God has those.  He has the little things too but for some reason, he's teaching me patience there too.

Right now, I am trying to accept this reality.  I have held on to so much hope for that overnight miracle that I never allowed myself to see the actual life I was living.  The reality that our life has drastically changed and won't be back to how we had it anytime soon.  The reality that I'm not getting better right now.  The reality that my family has to take on a lifestyle change as well.

Right now I have to remind myself to look back to how I was feeling six weeks ago.  I was stuck in the hospital, not able to go home when I thought I could.  I was in pain and I was feeling miserable.  But I only had up to go.  I have to remind myself that my body did heal from the surgeries and that yes, one day it might function again but right now I have to respect it and take care of it.  I still have challenges, but those challenges have changed.  Learning to accept that healing doesn't happen on my time is tough.  Really tough.  Maybe it's because I've been dealing with these issues for so many years that I think it's ok to say I've had enough.  I have had enough!  I don't want to be in pain anymore.  I don't want to feel nauseous from eating or from not eating.  I don't want my skin to stretch and hurt so bad that I want to cut it open and release the pressure.

The weight is coming on quickly but along with it is swelling and leg pain, a puffy face, decreased appetite and lots of nausea.  I have learned to keep Zofran all over my house and I'm thankful for the majority of the time, it works.

My health is not the only thing that we are dealing with in our home right now.  My beautiful grandma moved in with us one month ago because she has gone on hospice.  She is still doing well, considering.  She joins us for every meal where we get to hear stories and she praises my kids and feeds us love.  We are all so blessed having her with us right now as she goes through this transition.  I know many people think we are crazy but I would not have it any other way.  For one, I wouldn't be able to drive to a facility to visit her so having her with me daily is wonderful.  She's still teaching me cooking tricks, and beating the kids at cards.  She's amazing and a blessing to our family.

Alexis has been dealing with tummy issues for years.  Honestly, I thought it was anxiety but about a year or 2 ago, she started vomiting after eating certain foods.  We figured out which food was causing it and avoided it but then more problems starting popping up. We have a strong family history of food allergies on my side of the family so I took her in to see the doctor.  We learned that she had lost several pounds in a short amount of time and after a bit of frustration, we eventually landed in the right specialist's office.  She finally had blood work done and found to have multiple food allergies (although not severe) and a low IgA which could be an indication of Celiacs Disease.  We don't do easy fixes in this family.  We changed her diet and watched her symptoms improve although a little slip up will cause problems so Anthony and I are the only ones that will cook for her and if she goes anywhere she packs her cooler.  Even with the change of diet, she has developed joint pain and eczema, both signs of Celiacs.  Her GI doctor needs to confirm the diagnosis through an upper endoscopy which i was hoping we could hold off on, or avoid altogether.  She explained the importance of the biopsy results for her so we agreed and now we have to reintroduce the wheat for 2 months.  This is awful.  Alexis is so upset about having to eat something for 2 months that she knows will make her feel miserable.  All I can do is hold her and emphasize with her.  I can't take her pain away and that hurts us all.

This post was tough to write because it's not as upbeat as usual.  Not feeling well is wearing on me.  So for right now, I will sit and wait for the better days to come but I'm allowing myself to accept that our life isn't the adventure we thought we would take.  The beauty of it all is that we are together on it.  We are closer than ever and our love is stronger.  While we wait, we will dream of stress-free, pain-free, laughter filled days frolicking in the ocean together.  We will get there, but not right now.

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If I were to write down all that was going on in our life today, you might picture a dark, stormy and scary time.  If you were to stand outside my home looking into the window, you would see love, light and joy. You would see a family laughing, a family together, a family helping each other out.  You would also see a mess but we can't have it all, can we?  This is a life we were given and an attitude we chose.  We all have choices on how we respond to life.

2 years ago I was on TPN for a few months after I initially was diagnosed with gastroparesis (partially paralyzed stomach)  The TPN which I received through a PICC line in my arm did what it needed to do and I was able to successfully put weight back on.  TPN and the PICC comes with so many risks that I really didn't want to ever have to go back on it.  I did pretty good eating on my own for over a year but last November my stomach stopped working as it should again.  I saw the surgeon who ran me through more tests, revealing grossly abnormal results and a surgery for a jejunostomy tube (j-tube) was scheduled.  A j-tube is surgically inserted into the small bowel and then you are connected to a pump and fed formula (similar to Ensure...not baby formula) for 24 hours.  I was told that I would stay overnight just to make sure everything was working well before leaving.  The original plan was to have the surgery and that night they would put water through to make sure it worked and then start on the formula. By morning, I could go home.  I ended up hanging out in the recovery room for my usual 5 hours instead of the 1-2 they told Anthony and then I was moved to a room where we would begin our vacation.  After not eating anything for 46 hours we finally started the feeds the next day and it was decided at that point I needed to stay another night to make sure it was working.  The goal was to be at 60ml per hour, starting at 20ml and increasing by 10ml each day.  I never got above 30ml before I needed to start decreasing and eventually stayed at 10ml.  My tummy wasn't loving it.  Big shock, I know.

That chocolate milk you see is what I mostly eat now.  I will still be able to eat real food but this formula will help me put weight back on and supplement what I can't get in orally.  As of right now, not much is going in orally or via the tube causing further weight loss.

Anthony and I have been trying to get away for years on a little overnighter so this 3 day trip to the hospital took care of that.  There is no way I would be doing as well as I am or have that smile on my face if it weren't for him.  He has been an incredible caretaker, never complaining about anything at all.  Not even when I woke him up every 30 minutes to help me go to the bathroom.  And now that we are home he is taking care of everything like a champ.  I am forever grateful and can't even express the love and gratitude I have for him.  I hit the jackpot.

I showed the kids the tube and Alexis made a comment about how small it was.  I asked what she thought it was going to look like and she put her hands together making a large circle saying that she thought the hole would be that big and I would have a tube connected that looked like a vacuum hose.  I was shocked.  I told her that must have been so scary to think that was what it would look like.  Her eyes welled up as she smiled and said, ya.  What our kids have been put through their entire lives doesn't seem fair sometimes but then I step back and think they are the luckiest kids in the world to have two parents who love each other more than love itself, a supportive family and virtually, a stress-free life.  We have it so darn good that I sometimes forget that having a sick mom might be frightening and suck sometimes.  

 Last night my healing came to a screeching halt.  I could feel my intestines filling up over the past few days and not emptying, my abdomen was becoming distended and I just wasn't feeling great.  I decided to take a shower so I unhooked from the IV pole, flushed my tube and while pushing the water through with the syringe, the syringe popped out along with water and then the tube filled with bile.  I immediately sent a message to a friend who has a ton of knowledge and has given me so much support and as we were writing back and forth, I started really not feeling well.  I got to the bathroom with Anthony and all hell broke loose, literally.  The incision area is still so painful so you can imagine the pain as my body was heaving but all I could think of was 1) I needed the paramedics and because I was getting ready to take a shower, they were going to show up and find me naked with bodily fluids all over and 2) I really really wanted that shower before going back in the hospital.  As those thoughts passed, I just prayed for the Lord to please stop the pain.  I was saturated in my own sweat, shaking from chills and feeling horrible.  Anyone that knows me knows that vomiting is close to death.  I really thought I was dying.  I called my surgeon and he had me stop the feeds and give my gut rest.  We both felt that not tolerating it was a result from trying to recover from surgery which is already a difficult task, plus not going to the bathroom in so many days so basically, all the formula going in had to come out and it pretty much exploded out.  Naturally, things like this happen on Friday evenings so the doctor wanted me going to the ER if I got sick again, my belly became distended again, or I developed a fever.  Thankfully, I felt so much better throughout the night and have realized this process is going to be even slower than I thought.  I really need it to work.  At this point, it's my only hope for obtaining proper nutrition which is pretty important when it comes to surviving.

Here is my new tummy.  I am really looking forward to being recovered from this surgery, having a working tube, getting proper nutrition, and being back on my feet soon.

2 Corinthians 1:3-4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

My friend Allyson (the one I mentioned above who has been so informative and randomly we were introduced through another friend and she happens to be one of Anthony's best friends cousin) posted this beautiful song and it touched me so much.  I hope you enjoy it as well.
https://m.youtube.com/watch?v=1spkhp41ig4