Friday, March 28, 2008

G-tube is OUT!

Her tube is OUT!    Wow, have I looked forward to saying that!

It was painful and she cried a LOT. I'll try to write more later when I have 2 hands. It sounds like the next couple of days may be challenging with leakage, dressings, etc. We would appreciate your continued prayers. (More specifics later.)


I awoke early this morning (for me and with the help of an alarm - LOL).  Eliana decided to sleep in.  Isn't that always the case?!  I did wake her about 8:15 so that she could eat before we went in.  My sister was here with the children and they were all excited to play!

When we arrived, we had a long wait.  I sat beside a woman and her son.  He has a rare syndrome which has left him profoundly delayed - both physically and mentally.  He also has a g-tube which she asked me if Eliana had.  As I watched her with him, I thought of what challenges she has faced.  She has only ever met ONE other person with a child with this syndrome.  That's hard to imagine from a support and knowledge perspective on how she has dealt with things.  Praying she would find comfort, strength and wisdom as she walks this path.

It also made me reflect on on the future (which I try NOT to do very often).  I often get comments on how cute Eliana is - and I believe it!  I know I'm biased, but I think she is adorable.  I know that things will change as she ages and that to have disabilities as you age is hard.  I was going to write more, but think this is probably good.  Back to the blessings of the day!

We finally met with the surgeon, Dr. Rice, who said it looked like she was doing well and asked if I was sure I wanted the tube out.  I told him "Yes" and said that we hadn't used it since late Oct/early Nov when she'd had salmonella.  His next question really caught me off guard.  He asked "Why did you wait so long?"  Huh?  I didn't realize that it was a choice!  Because my ped told me too!  I've been wanting this out for months!  We were told to wait through the sick season and then get it out.  I was even told the surgeon may not want to take it out.  He said that he was willing to do whatever the parents wanted.  He only asked because he has had people come back a day after it was removed wanting it back in.  I assured him that we were ready!

The next few moments made me again feel like an unprepared Mommy.  He asked if she'd had tylenol.  I said no, but that I'd like for her to have it if he were going to remove the tube.  If I'd known, I'd have given it to her in advance.  I should have thought it through and given it to her anyway.  Parenting isn't for cowards and there are so many opportunitites to "beat yourself up" over your mistakes. 

He took a look at her site and then said he would take it out.  With one hand on her stomach, he used the other to just yank it out!!!  (There was nothing to deflate as she had a BARD.)  No meds, no pain relief - just a hard pull and it was over.  It clearly hurt her too as she began to cry and scream unlike her normal cries.  It was hard for me not to sob with her.  She had a LOT of leakage too - a lot (both blood and stomach contents).  He applied multiple pads to clean up her site and then I got a peek.  Ugh.  Poor baby.  He used silver nitrate to cauterize the inside of the site to help it stop bleeding.

All this time she is crying and crying and I'm doing my best to comfort her.  Dr Rice then puts a bandage on her and tapes her up.  I hold her thinking she may settle, but she doesn't.  She cries and cries some more.  A nurse then came in with tylenol, which I gave her, but this doesn't settle her down either.  A little boy from another room even comes to peek in to see what is going on.

Dr Rice said that for the next several days that her dressing will need to be changed often - every couple of hours as she will leak whenever she is fed and just through the day as well.  I need to watch the amount of leakage because if it is "too much" then she could get dehydrated.  He said things should improve (amount of leakage) and begin to heal after several days.  If she is not completely healed by 3 to 4 weeks, then I need to call and have her scheduled for surgery to close the site.  Oh, I'll need to watch her skin with the tape too so that it doesn't "break down".  She has had problems with this in the past.  All of the leakage will be acidic which is hard on the skin.

I expected this moment to be filled with joy - and was caught off guard by some of the other emotions I felt including sadness.  And guilt over not being better prepared.  The stress of dealing with medical issues can be hard - especially when it's your child.  We are supposed to travel in 2 days with friends and I'm wondering if this will be feasible.  In fact, when I asked the surgeon if this would be a bad week-end for travelling, he looked at me surprised that I even asked.  He said it wouldn't be the best, but I could probably do it. 

If you have read all of this, thank you.  We would love prayers for the following things.

  •  Healing of her site with no infection or problems.

  • Her skin - that it would not break down under the constant changing of tape and dressing.

  • Wisdom in knowing if her leakage is "too much" and if/when to seek help if it is needed.  (This would be a hospital trip.)

  • Is it too much to ask that her site heal on her own without the need for further surgery?  I really just want what is best.

  • Wisdom on doing what is best for Eliana - including knowing when to change my plans in order to best care for her.

That's all I can think of at the moment.  Please pray as you feel led for our family.  I'm so very thankful that we are almost at the end of this chapter.  I'll feel that it is complete once she is healed.  I guess I hadn't really looked beyond getting it out until now. 

Eliana fell asleep on the way home and had a short nap here.  When she woke up, she was happy.  She is smiling and seems herself.  Thank you God!  I'm planning to continue giving her pain meds today and as needed. 

One other thing, Dr Rice asked if the g-tube had been worth it.  Had it been helpful?  Absolutely!  She had enough damage and trauma from the NG that I don't think she would have learned how to eat without it coming out.  Her progress was slow enough too that she needed the g-tube for a solid couple of months to help her maintain her weight and fluids.

I am thankful that we had this opportunity.  I'm thankful that this was available and an option for our little girl.  I'm thankful for Dr Rice (he is soooo nice!) and the many others that have cared for us.  I'm grateful to the Great Physician who has held Eliana in His hands since long before we knew or loved her.

We are blessed beyond measure!  Thank you for your prayers.

With love,