Surgery #9 Day 3 – More Changes….

I apologize for the lack of updates for the past two days.  When we are in the hospital, time moves along both excruciatingly slowly and super quickly. I cannot explain how it happens, but I promise it does.

Friday saw Zack still having trouble with pain.  It is common after abdominal surgery for it to take time for the intestines to begin working again.  Zack’s intestines typically begin working in about twenty-four hours.  This time, however, they decided to change things up.  At twenty-four hours after surgery Zack still did not have any output.  His stomach was beginning to get distended and hard.  The doctor was not overly concerned because Zack was not vomiting, but we kept him on sips of liquids rather than beginning food.

Zack does not like to be in the hospital bed. He will do anything to get out of it.  Even when he feels bad, he will make his way to a chair or sofa.  On Friday, Zack spent almost the whole day in his bed.  He wanted the TV and lights off.  We knew he was feeling sick.  Finally, near the end of the day, his output began to start.  Because it was so slow, Zack still did not feel much better and was pretty teary and clingy.  Thankfully, he was able to get a few hours of consecutive sleep and woke up feeling much better on Saturday.

Our guy requested his traditional first meal of pancakes and managed to eat most of one before declaring himself full.  Saturday was also the day that Zack finished his course of antibiotics.  We always rejoice when medications begin to be decreased.  Zack declared himself free of pain and ready to get rid of his PCA.  The pain team kept Robaxin and Valium and rescue doses of Dilaudid on his orders to help cover his pain, but he only ended up getting the Robaxin.

We were surprised that Zack still did not want to go to the playroom.  He was ready to begin walking the halls though and did an awesome job cruising the floor.  The surgery team decided that they wanted him to keep his catheter in for one more day to continue to closely monitor his fluid losses.  Zack was actually happy about that…he is a strange one.

Last night was my turn to sleep in the hotel.  It was glorious.  Room service for dinner, celebrity Chopped on the television, and seven hours of uninterrupted sleep in a soft and cozy bed.  Glorious, I tell you!  When I got back to the hospital this morning, Zack was already up and in his chair playing Lego.

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Drew and Jake arrived and surprised Zack this morning as well.

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Once Z had his pesky catheter removed, he decided that he wanted to show his brothers all around “his” hospital.  We walked down to the playroom so that he could challenge Drew and Jake in a game of Wii and show them his favorite toys.

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After that, Zack wanted to show them all of the pretty Christmas decorations in the main hall.  Here are a few of his favorites, the Superhero tree and Batman wreath.

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After that, Zack was wiped out.  It was a good time to head back to his room and get some snuggles with his biggest brother.

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Zack’s nurses have been surprised at how quickly he has recovered today.  He is looking great and has much of his energy back.  He has been doing so well that his surgeon is ready to discharge him tomorrow just five days after being admitted.  Considering all that he had done, that is pretty amazing!

Our surgeon also talked to us about some concerns she had with our current plan to start Zack’s refeeding trial this coming week.  She told us that after thinking things through she felt that it would be best for Zack’s anastomosis to heal for about a month before beginning his refeeding trial.  With all of the complications Zack has had, she wanted to be sure that the test accurately reflected his colon’s ability or lack of ability to work.  If we tested him now and there was a problem, would we be certain it was because of Zack’s colon OR would we wonder if the healing process was skewing our results?  We have struggled with similar issues before, so her new plan actually made a lot of sense.

We all know that the latest manometry test revealed that most of his colon was not working.  We also know that because of his high ileostomy output, he is not a candidate for the jpouch surgery or able to keep an ileostomy without prolapsing.  This has complicated our next steps and made things much more difficult.  If Zack is to be reconnected (this needs to happen), some portion of his colon must remain… but which part and how much?  We need the refeeding test to be an accurate representation of what is going on inside of Zack’s intestines.

Jim and I were not thrilled about the new plan at first. We were already in Cincinnati. Jim had time off from work.  We had a room waiting for us at the Ronald McDonald House.  Christmas presents were bought, wrapped and in the trunk of our car.  Drew and Jake were already here.  I do not like changing plans like that.  It messes with my mind.  Once we had a moment to sit down and discuss things, however, her plan made much more sense.

Zack’s surgeon also told us that if we were comfortable with the idea, she would be willing to have us try the refeeding trial at home with the help of our Walter Reed doctors.  That would save us another trip to Cincinnati.  We really liked that idea.  I was able to speak to our GI back home and he felt confident we could do it there as well.  Our surgeon here will be talking to both our GI and surgeon at home to talk about her plan as well as plans for different complications that might arise.  And so….a new plan has begun to form.

It should not have surprised me that things would change once again.  I think this is a lesson I must need to learn many times over because it keeps on happening.  The good news is that if Zack is discharged tomorrow, we should be able to drive home on Tuesday and be able to spend Christmas at home.  We just need to be able to coordinate all of the home nursing needs we have with our infusion supply company before we leave.

There is much more to this story, but once again it is late and I am tired.  I will post again tomorrow and let you all know what actually happens with this ever evolving story.  Until then…

Hug your babies!

~ Dawn

 

 

 

0 thoughts on “Surgery #9 Day 3 – More Changes….

  1. I’m glad you get to be home longer, and that your doctor seems very thoughtful of the whole overall process. Also, I’m amazed at photos of Zack, and how it seems he just continues to grow despite all he has to go thru. His brothers are pretty awesome too. Thank you for the update, and blessings on your whole family Dawn. Prayers continue.

  2. Wow! I seem to remember someone telling me that humans make plans and God laughs. He has better ideas. Glad you’re going to be able to go home for Christmas. Hope Z is peeing properly by now. Love and hugs

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