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Feeding Tube Update (2wk)

I thought I better take some time to update (mostly for my own records and to help those who are facing the same journey now or in the near future).  There is something profoundly therapeutic in tracking the hand of God through any trial or hardship.

This has been a wild ride, but definitely produced many blessings in the midst of it all. We have felt the love of the Lord through our friends and family. Chronic illness is difficult in that it is not a one time occurrence, or even a year or two or trials.  It is not, nor can ever be a sprint, but rather a marathon of a beautiful life full of trials and perils ahead.  Thankful for so much today, but thankful for this very sweet note from my girl the other night.

The front said, “Thank you mom for everything you do for me. Thank you for helping me through the hard times.” Melt my heart and bring an instant tear to my eye.


Okay, on to adjustment to the actual feeding tube.  The struggles have been interesting on all fronts.  Rachel had surgery two weeks ago today.  Pain was definitely a difficulty the first week or so.  The last few days have been good though.  She is in minimal pain at times throughout the days, but nothing that a couple of molten can’t handle.  Yesterday she even asked when she could start running.  I took that as a really, really good sign!  The button is still sore to the touch, and she often grimaces when touched or accessed.  Yesterday we had a follow up surgeon appointment.  He removed the incision strips which was a bit uncomfortable but tolerable.

A l little icky seeing the dried blood from the knotted sutures left just under the skin. But healing nicely.

View from the inside. Kind of cool, huh?

Although there were only 2 actual incisions, there were 6 holes in her abdomen in total.  4 holes from the stitches that were tied and hidden under her skin from tying the stomach up to the abdominal wall.  Did you know that your stomach is not held in a specific position by much?  When you go on a roller coaster and feel like your stomach moves…well IT ACTUALLY DOES!!   One of the reasons that they needed to tie/stitch her stomach in the place they wanted it to be!  (By the way, we have been around the cf world for nearly 12 years now and have watched and heard from crowds of people about feeding tubes, however there were so many things I have learned along this process that has been so incredibly fascinating.)  Last night we sat around after dinner watching Rachel’s tube suck into her tummy for several seconds and then pop out.  We were told by the surgeon, it is her bodies way of trying to absorb or digest the button.  Interesting!  The first time it happened, Rachel screamed in pain mostly because it was pulling on a new incision, and second because it appeared that someone was pulling on her button from the inside.  It completely sucked down into the hole till it was flush with her skin.  It was the most unusual thing that I have seen to date with the tube.

You can see from this angle that there is a bit of room between the skin and the tube with out the guaze. When the tube sucks in, it takes that area and then continues to look as though it is embedded in her skin. SO wild.

As far as lungs health, Rachel is doing well.  During her check up this week, the doctor listened to her lungs and thought they sounded healthy.  This week Rachel was finally able to do her treatment with her vest for the first time in nearly 10 days.  She still leaves the bottom buckle undone and is still working to clear junk out, but overall doing well.  We have spent a lot of hours with hand pounding and extra nebulizer treatments over the last weeks.  Despite the extra work of all of this, we are truly thankful that there is “something” that we can physically do to make life a little better for Rachel!

Learning the ropes! Love seeing her desire to be an active participant in her care.

Adjusting to the actual feedings has been a bit of a tricky non-science.  The first access of the tube resulted in a violent expelling of contents. Rachel has always had a pretty sensitive stomach so this continues to be no surprise.  At first, every time we accessed her tube she felt nauseous. The first week home there were several times that she was found in the middle of the night and early morning hanging her head over the toilet.  Poor girl, felt pretty miserable for the first 10 days or so.  Everyday and nearly all through the day she was nauseous and did not consume many additional calories by mouth (as in less than 200 a day).  Even with Zophran several time throughout the day, it was a bit rough going.  The doctors wanted a pretty aggressive increase of volume in Rachel’s feeds and we tried to double the formulas every day or two.  However, when we figured out that she was at a point that she just could not deal with the feeds very well, we knew we needed to do something different.  We reached out to the cf community, and were blessed with a wealth of knowledge shared.  Thanks to a sweet cf warrior friend, we were encouraged to ignore doctors plans and work on Rachel’s plan.  This included cutting way back on the feedings. We heeded the advice and saw immediate results.  Doctors wanted us to be at a feed level of 1000 ml for the night (roughly half of her calorie needs of 3,000 calories).  And to run the feeds at 125 and hour/8 hours.  We have cut back to 55ml per hour for 10 hours.  I think this slower rate has been a beneficial things for Rachel.  Thankfully, Rachel has had a slight increased hunger with this change. Slow and steady wins the race.  AND, we plan to win this RACE!!

The feeding pump has been both a blessing as well as a nemesis for the last few weeks.  In the last 14 days we have had one night where we were able to sleep mostly through the night.  The other nights have been full of screeches from the pump several times through the night.  The first couple of nights home it was due to the line being occluded (Rachel rolling over on it, and kinking it somehow) at least a couple of times a night.  We are also figuring out that there might be something wrong with our pump.  When we set it for 10 hours, it often peeps “feed done” around 2am or 4 am.  We spoke with home health yesterday and she explained how to reset the machine and adjust some other things on it.  If this does not work, we will have the opportunity to exchange it.  (Rachel sleeps through the alarm, however mom and dad do not.)  Feeling a bit of hope that we will be on the right track soon and all be able to get more sleep soon.

Another things that we have struggled with is the actual formulas.  Rachel has some intolerances to milk, and a recent allergy that has diminished.  So there is still some concern that the formula itself has been difficult for her body to absorb well.   We have research and worked to locate a food based formula that may work for her. Last Wednesday we found out that no formula is covered through our insurance.  There was a grant available to families of those dealing with Cystic Fibrosis.  However that grant changed by a 90% reduction rate last Monday.  We are developing  a plan of action in address this particularly HUGE issue.  Insurance will cover everything dealing with the surgery, the button, the equipment, and yet will not help pay for a dime of the formula to put into the tube.  Frustrated, disturbed, and a bit overwhelmed at the current point, but not without hope.  We are confident that God will make a way for this.  We have looked into making our own formula, however there are many other issues related to that process that we are coming up against too.  If we need to, we will figure out a way, but currently we are conserving mental energy to get well and learn a new normal.  Social workers and dietitians are helping search out other options for paying for formula that will be $500-$1,000 out of pocket a month.

There definitely is a bit of a learning curve in figuring out clothing that works well for Rachel’s new hardware.  We went to church on Good Friday and the shirt she choose was comfortable, but the stripes made her tube stick out like crazy.  It made me a particularly sad to see it protruding from her midsection.  It was a deep felt  reminder that for now, cf has an outward mark daily of its affects on her precious body.  But..it is also a mark of her ability to overcome obstacles greater than her!

Easter morning, we dealt with a bit of the same.  She tried on several dresses and the first two had a tie right where the tube was placed.  No matter how hard we tried to loosen it or make it comfortable, it was not working.  We ended up with a sunny RED dress from Christmas. Perfectly comfortable…well, at least comfortable enough to make it through Easter service.  She changed into something more comfortable at lunch. =)

Much more comfy!

And, the best for last…Rachel has now officially gained nearly

5 pounds since surgery!

AWESOME praise.  I LOVE SEEING HER brilliant smile when she steps on the scale.  It is beyond anything that we could have asked for.  While this has been a bit bumpy, we know that this will be a good thing for her.  It is just a matter of getting over the hump of pain and discomfort for us all.  We continue to daily trust in the Lord for His grace, perseverance and care for our family.

Journey…of FAITH



One Response

  1. I told you the weight would go on like magic! 😉 The docs never told us about the button “sucking in” as Tom and Emily call it, but Tom figured out it is when his stomach is growling. Time to eat!
    It also hadn’t been explained to me that if you don’t finish a feed, the machine has to be reset to zero, or else the next fed will just pick up where the last one left off. I’m guessing that’s what happened to you? I turned off the “dose done” alert so we wouldn’t be woke up when the feed finished, and I’d find in the morning that the next one was only half done. Took a few times for me to figure that out.
    We also thought the rate they wanted us to vamp up the feeds was ridiculous. One of the nurses (or dieticians?) also told us to ignore that. 😉
    Have you looked into Healthwell for formula coverage? They JUST split their CF coverage into two separate funds. One is just for vitamins and supplements, including formula.
    For Emily I buy shirts labeled “tunic” because they’re so loose. It’s hard to find dresses, but I finally found one at Kohls for Easter that has no waist whatsoever.
    Good luck as you continue the journey! I can’t believe FIVE POUNDS in two weeks, even with all the feed problems!

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