Wednesday, May 30, 2007

I'm up to 30 times now!

I remember when I posted one of my "numbers" posts and the number of times I had put in the NG tube was 4.  I thought that was a lot.  It was at that time.  If I'd known then that the number would rise so much more, I'm sure it would have been overwhelming.  It has gotten easier - but it still isn't easy.  So very often now it gets caught on her gag reflex.  I sometimes wonder if it's swollen or irritated?  Especially over this last week with having to replace the tube so many times.

Some of you that are into numbers may remember my last post when I stated that I was up to 27 times.  Yes, it's been 3 more times since then.  She has pulled it out every day this week and one day 3 times.  *sigh*  Some times I just want to cry when I see that tube in her cute little hand. 

Today - like another day this week - one of my children peeks into her crib and then comes to tell me that she has pulled out her tube.  I've been leaving it out for longer chunks of time in order to try and let her face heal.  It's looking better - no more blistering though it is still red and the skin is rough.  Still putting creams on it.  During the time that it is out, I'm still trying to feed her by bottle. 

So this morning when I see that the tube is out for the 5th time, I decide to call the cardiologist and the pediatrician to ask for advice.  I leave a message for the ped and then phone the cardiologist.  He gives me two options.  The first is to put mittens on her hands so she can't grab it.  I'm not thinking she would like that, but can see how it could be effective. 

Here is the second option.

Can you see that the tube is going up her nose and is taped to her forehead?  It was hard getting this tube in.  It was just stuck on her gag reflex.  She started to cry and I had to just gently keep trying and trying until it finally went down.  Poor little girl was just sobbing by then and it was really hard to get it taped into place!  There just isn't much room around her nose at all!  I just held her and cried.  I know I have to do this, but it's still just hard some days. 

Catherine helped to tape it down and then put her bow over the tube to hold it in her hair.  We thought this might help her not be able to get to it.  I offered her the bottle after the tube was in.  She had been without the tube since 8am.  Over those 14 hours she ate less than 6 ounces.  She should have had 20oz.  One of the feeding therapists came by today and couldn't get her to eat much at all - and she tried for over an hour.  She wants me to try a couple of days of no tube feeds except at night to stimulate her hunger.  I just don't think that is it however.  I can tell when she is hungry and there are times when even that doesn't help her to eat.  There is just something else going on.

I wish I knew what it was - but I don't.  I guess I'm in good company because none of the professionals that I'm seeing can figure it out either.  Though they are trying.  I'm thankful for my friend Catherine who is also reading and researching trying to help find answers, suggestions, anything that might help.  This part of the journey can feel lonely and overwhelming.  I'm expected to help my baby and make decisions and I just don't know what to do.  There just isn't an answer - or at least not an obvious one right now.  I shared with our case manager (helps to coordinate Eliana's therapies) that it's hard to know what to do when the "experts" are telling me different and sometimes conflicting things to do.  She affirmed that I'm also an expert - on my daughter.  It was sweet to hear that reminder. 

Back to the cardiologist.  I asked her what was the timeline for the G-tube, meaning how long could we go until it was the only option remaining.  He thought we still have more time.  If we decide that is the next option he said it could be done within a week of scheduling.  Our next appt with him is in a week and a half.

Our ped wasn't in today, but I'm sure will call back tomorrow.  I talked with one of the nurses there and she was very nice but not able to give me answers either.  She offered to have us see a different doctor, but I'd rather wait and see the one that knows Eliana and has seen her LOTS.

Here's where we are with feeding right now.  We are hoping to see something that will make an improvement.  I've been trying some sensory input (kind of like a deep massage on her arms, legs and back with a soft brush).  While she doesn't mind it, I'm not seeing any change.

Next, I can ask the ped for a prescription for Zantac.  This would help if she is having any reflux.  If she is then it is silent.  I don't really see symptoms.  This would be an easy answer though.  Something that is easy to "fix".  I'll probably try to start that in a couple of days.  We are trying to space out the new things that we try so that if there is a change, we can know what to attribute it to.  After that, I'm not sure.

I'm not scheduled to see that new feeding therapist for another 2 weeks.  It's really too long, but she is on vacation this week and was full the following week.  *sigh*  I really wish she could be seen more than once per week.  This was suggested to me by an OT in the hospital and at the time I didn't get it.  I do now though.

Oh, I forgot to mention that while watching her during her 10pm feeding (just after getting the new tube), I saw her reach up and grab hold of the tube at least 4 times.  *sigh*  I was hoping she wouldn't be able to reach/grab it off of her forehead, but clearly she can.  Time will tell if she leaves this one in any longer.

It's late and I should go to bed.  The children are in "camp" this week.  It's a cooperative camp that includes 10 families.  We split up the teaching resposibilities and share the work.  It's a lot of fun for everyone.  The older kids are off-site for the first time doing things like geocaching, canoeing, biking and a ranger program at a local river.  The younger children are enjoying a "Fun with Nature" theme.  Catherine and I are teaching tomorrow on birds.  We did this same topic 5 years ago with the older kids so the planning was very easy.  We are looking forward to a fun time.

Please continue to pray for Eliana's feeding.  Here are some specifics.

  • Improvement in the volume she is able to consume by bottle

  • Wisdom in finding out if there is a problem and identifying it.

  • Wisdom in knowing the best course of action to take.

  • Strength and peace to go with a plan or to say no if it just doesn't seem right for Eliana

  • Appointments with the OT/feeding therapist sooner rather than having to wait.

  • That her feeding tube would stay put for many days!!!

  • Wisdom in knowing if she needs a G-tube and peace if she does

  • Health for our little girl

That's all as it is late and I'm very tired.  Morning always comes too soon for me. 

With love,