Saturday, July 14, 2007

The Drama of a Feeding Tube

Sometimes as I'm writing I ponder on the "drama" of our lives over the last almost 7 months.  I haven't always had a dramatic life.  In fact, I think that for the most part my life has been pretty calm.  I sometimes wondered how other people could have so much drama in their lives and didn't realize that it just wasn't my turn yet.  It isn't that nothing ever happened - it just wasn't so constant and on-going.  I wonder when our lives will be at a point when I have nothing to share or write about.  No pending medical tests or procedures.  No waiting on news from a doctor or therapist.  Just the daily  happenings of life in our family.  One day, things will probably be calm again.  Though I guess that is relative.  For some, imagining life with 6 children in the house might sound like anything but calm.    I'm looking forward to the day when all that I have to share is something funny someone said or a project, outing or book that we've shared as a family.

When I was last writing, Eliana's tube had just been pulled.  Little did I know the drama that was about to ensue.  After getting the tape off of her face and pulling the tube out completely, I got Eliana ready for a bath.  I always bathe her when she has pulled her tube as it is soooo much easier to wash her hair and face without the tube in the way!  After getting her cleaned up, I starting getting her things ready for tube placement.  After getting out all of the supplies, I realized that I was out of tubes.  It wasn't a problem though since I had a new shipment that hadn't yet been opened.  I had thought if I didn't get into the it that I could just return the unopened box.

Well, I got one of the tubes and when I opened it, I could clearly see that it wasn't the right size.  It was too BIG!  It was an "8 French" instead of a "5 French".  This measures the diameter of the tube with one being almost half the size of the other.  Well, I knew that the large size just wasn't going to work in Eliana's tiny little nose.  Not too mention the trauma of inserting one so large on her throat.  If the small size gets "stuck" on her gag reflex, I could only imagine what the larger one would be like.

The error in the delivery frustrated me as this is the second time that it has happened.  I have been very clear on the phone as to the size, brand and type that I needed.  I did happen to have some other "5 french" tubes on hand.  They were a different brand and style that I had not used before, but I decided to try them as it seemed like the only option.  Just as I was preparing the tube, I had the insight to check and see if the port from the feeding bag fit into this new tube.  It did.

My friend Rebecca had been holding Eliana and she had fallen asleep.  We layed her down on a blanket and wrapped her up - still asleep.  I decided to try it while she was sleeping.  Catherine held her head still while I put in the tube.  It went in pretty well.  It did get a little "stuck" at which she started squirming and fussing a little, but not waking completely up.  Finally it went in and she remained asleep.  What a  nice "last time" I thought.  I'm so tired of doing this to my baby.  I'm really looking forward to this being over.  I was pleased that I had tried something new and that it had worked out just fine. 

Shortly after this I start her feeding and went downstairs.  When we heard a funny noise over the monitor, I rushed back upstairs and found that the port from the feeding bag had become separated from Eliana's feeding tube.  So it was just "feeding the bed".  I immediately said "Oh Eliana", thinking she had pulled it apart as she was now awake.  I put the tubes back together and started it again.  It immediately popped off.  Oh no!  I put it together one more time and held it while I started the pump.  I could feel it start to pop and then leak as I held it together.  It clearly was not going to work at all. 

I first called the medical company that ordered the wrong size tubes.  I got a nice man that was on call.  He drove to the warehouse and looked for the correct tube.  They had none in stock.  He offered to fuss at someone on Monday for the mistake that was made.  He also said he would call the owner of the company and have him call me about what my options were.  I never got a call from him.  To be fair, I did continue to use the phone to try to find out other options.  None of the calls were long though. 

I decided that since Eliana had already missed one feeding that I couldn't just wait around.  I tested a syringe with some water to see if I could feed her this way.  I then gave her a complete feeding by using a syringe to push the formula into her tube.  It took 45 minutes and my hand ached afterwards.  It worked though.  As I was doing this, Rebecca made phone calls to several medical supply centers in our area.  We live in an area with a LOT of medical services.  None carried this tube.

At this point I felt like my options were dwindling.  I knew that I could go to the hospital to get one - though I would have to go to the ER as I was sure I couldn't just walk in and ask for a tube.  I considered calling someone in the hospital, but the numbers that I had were for cardiac fellows.  I wasn't sure this was the route I needed to take.  I decided to call our pediatrician to see if she could help.  Dr. L is leaving tomorrow to go out of the country on vacation and I hated to bother her as I was sure she had a lot to do.  She was so gracious - and helpful.  I know I have said this before but we have such a fabulous pediatrician!!!  (I often thank God for having her there in the hospital after Eliana was born.)  After I explained what had happened and what I had done she offered to call one of the hospitals for me.  (We live close to several.)  She called me back not too much later to say that she had talked with a nurse that was willing to give me a tube in the correct size.  She gave me the nurse's number in case the nurse wasn't able to get me.  She also told me that if this didn't work, to call her back.  Isn't she great?  It was a Sat afternoon and she was busy - yet not too busy to help my little girl. 

I waited awhile and then phoned the nurse.  She told me that she was willing to meet me at the hospital entrance (so I wouldn't have to park) to give me 2 tubes.  Oh, what a blessing!  My only other option was to go to the ER and wait for someone there to place a tube for me.  That could have taken ... hours.  It could also have exposed Eliana to a wide variety of germs that she definitely doesn't need this close to another surgery.

With a grateful heart, I drove to the hospital.  The nurse was waiting for me as I pulled up.  (I had phoned just a few minutes earlier to let her know I was close.)  We then drove home.  This trip just took 45 minutes in comparison to what I sure would have been much more time - and money.

As I was driving home, I pondered how God had His hand on all of this.  It wasn't perfect, but it was good.  Had I wished it hadn't happened at all? Yes.  Would it have been nice to have had the right size tubes?  Yes.  Would it have been convenient to have known that the first tube I put in today wouldn't work with the pump?  Yes.  Would it have been nice if the medical supply company had the tubes I needed on hand?  Yes - especially since they would have delivered them.  However, I wasn't going to listen to the "lies" whispering that all of this could have been avoided.  It is part of the "rain" that I walked through today.  I'm sure it could have been much harder.

Through all of this - the whole drama lasting close to 8 hours from first tube out until final (I hope) put in - I had the support and help of good friends.  I have a fabulous pediatrician that was able and willing to help me today!  Had it been tomorrow she would have been gone.  (Though I'm hopeful someone else would have stepped in to fill her shoes.)  As I was driving to and from the hospital I was overwhelmed to tears.  Not sad, desperate tears at all.  I'm not exactly sure why I was moved to tears, though in part they were tears of appreciation for the details that were being worked out. 

When Eliana and I arrived home, we put in tube #38.  I'm really hoping that this is the last one!  If not, I have an extra.  I'm hoping that one will be saved to go in her scrapbook.  I certainly have enough stories to tell about that 16" piece of tubing.

I'm close to the end of an eventful day.  It certainly wasn't how I had planned to spend my day.  I was hoping to prepare/plan for the upcoming school year.  God had different plans.  I'm not sure what I'm supposed to have learned.  Maybe just another lesson on being flexible, being persistant and being thankful.

With love,


Voice of Truth

Sometimes when I ponder my life  - where I've been or where I'm going - it can become overwhelming.  There are times when I long for the simplicity of life as I remember it.  Times when I just want to stay home from doctor appointments and go out on field trips.  Both have been a huge change for me.  I was one that rarely ever took my children to the doctor.  I could count on one hand the number of times ALL of my children went to the doctor last year.  (I can only remember one visit.)  Eliana has surpassed that in one week many, many times.  I was also used to going on field trips once a week.  I love going on field trips.  I think hands-on learning is one of the most fun ways to learn about most anything from history to science and lots more in between.

Then there are the voices - both those in my head and sometimes from others as well.  The voices of doubt. 

It's too much for you to handle. 

Why isn't your faith stronger? 

Where is your joy? 

Is life always going to be so hard for Eliana? 

Are you doing the best for your family? 

Are you going to be able to homeschool the children? 

Shouldn't you put them in school? 

Are they learning? 

Are you able to be a good Mommy to all of them? 

As I was talking to God the other day, He reminded me through a song that there was only one voice that I needed to listen to.  There is only one voice that always holds truth.

But the voice of truth tells me a different story
And the voice of truth says "Do not be afraid!"
And the voice of truth says "This is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth     - From Voice of Truth by Casting Crowns

Thank you for this reminder Lord.  I want to listen to you.  I thank you for the many times that you speak your truth to me - through the Bible, through prayer, through songs and often through the love and encouragment of friends and strangers alike.

When the doubts some crashing in, then it is time for me to choose ... to listen and believe the voice of truth.

With love,


PS.  I thought I was finished and was checking over my writing.  Eliana was getting a feeding - and pulled out her tube!  It was too far out even though I caught it fairly quickly to get back in.  This tube stayed in a week.  For us, that is a pretty good length of time.  I'm hoping that when I replace this one today that it will be the last time that I have to do this.  It will be my 37th time.  And to think that at one point we thought the tube would be in for just 2 weeks until we could get to heart surgery and I hoped to NEVER have to do it at all!  It has been in now for 5.5 months.  It is time for it to go.   

As I was continuing to reflect and read my Bible, I had a few more things I wanted to share.  One of the reminders to me of God's desire for me came as I studied James when I was pregnant (and often after having Eliana).  I don't always understand, but am trying to trust that God will use all of this for good.

"Consider it all joy, my brothers, when you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anyhting.  If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him."  James 1: 2- 5  (There have been many, many times when I've prayed for wisdom!)

Also this week I received the test scores of my oldest two children.  After 6 months of very loose and unstructured learning, how did they do?  We did some math and lots of reading - the Bible and many other books.  (I'm so glad that my children like to read!)  I never felt that they weren't learning.  I also realized that many of the lessons that they were learning weren't going to be things on this test.  Things that hopefully will help them as they face the real tests in their lives, the trials and suffering that they will have to endure.  So, how did they do?  They scored high to very high on almost the entire thing.  It was nice to have that encouragment, though I hope that even if the answers had been different that I would have chosen to listen to the voice of truth.  God has called us to this journey and He will equip us to walk it even when it doesn't look like what we have prepared for and even when we feel less than adequate to do the job. 

One last thought before I close.  I was reading in Psalms this morning.  There were a variety of different ones.  Some praising God and His faithfulness.  Others in which the writer feels alone and abandoned.  Those don't always leave me feeling comfortable.  It reminded me though of the times though that I've shared my struggles, my pains and my fears.  God reminded me that David while not perfect, was a man after God's own heart!  At times I have wondered if I should be sharing all of the pain, the struggles, the hurt.  Was this a lack of faith?  Was I doing something wrong?  Was I causing others to doubt by my own doubts and fears?  Even in my doubts and wonderings, God comforts me.  I am seeking Him and it is alright to have these times of struggle - it is normal.  It isn't what I want, but it is part of what I need.  I am thankful that God chose to remind me of that this morning.  What I'm left with still though is a choice.  Who and what am I going to believe?  I know that it won't always be easy but I want to choose the voice of Truth.