Monday, May 19, 2008

Another New Button

(Abby with temporary Foley cath in place of GJ-tube)
"Rock of ages cleft for me, let me hide myself in thee;
Let the water and the blood, from thy wounded side which flowed,
Be of sin the double cure;
Save from wrath and make me pure.

Not the labor of my hands can fulfill thy laws demands;
Could my zeal no respite know, could my tears forever flow,
All for sin could not atone;
Thou must save, and thou alone."

This hymn (sung by Chris Rice in his new album Peace Like A River) played loudly as Abby and I drove to the hospital last Friday morning for another GJ-tube replacement. It was pulled out (by accident of course) during a therapy session the day before.

(Emergency tube securely taped, so as not to lose it while in the car!)

My stomach was in knots and I dreaded the day ahead of us.

I think my body/nerves have become programmed some how to do certain tricks when I drive near a hospital. It probably started when I was in nursing school... waking up before dawn, feeling nervous about my new responsibilities and spending hours at a hospital. Then as a labor and delivery nurse driving to work feeling the pressure and anticipation of my shift... not knowing what sort of night it might be. Some were joyful as I helped new people enter the world; some were grief stricken as I cared for new babies who would never take a breath.

But this feeling was mostly solidified during the hundreds of trips I took to the East TN Children's Hospital to visit my tiny baby in the NICU. It's difficult to explain or describe the sinking sense a parent gets while making these treks; knowing your child is critically ill but not knowing what will happen from moment to moment. Hoping against hope that your child will have a good day, and that you can hold it together until you are alone.

So going to hospitals now brings all those emotions to head, even if I'm just going to see someone I barely know. The smells, the sounds, the waiting rooms; they all stir up an incredible sick feeling deep in my gut.

Anyway, listening to "Rock of Ages" on our way to Abby's procedure somehow lifted the heaviness and temporarily soothed my pitted stomach. I realized once again how much I need to give Abby over to the Lord. This process has taken me 4 1/2 years to learn and I'm still forced to practice every day. Some days my grip is so tight I lose sight of everything else around me. It's like I can't move my head, I'm just looking straight at Abby, blocking all other voices and images out so I can try to fix her. This is probably why there are days where I feel so totally drained, depleted and discouraged that I haven't "fixed" her. Isn't this what mothers do? Kiss the booboo's away, wipe the tears and hug their children until they are better! It works with Josiah... why won't it work for Abby?

"Thou must save and thou alone."

(Josiah-after waking him up to take Abby to the GI doc)

Back to Abby...

Friday ended up being a longer morning than I had anticipated. The same nurse we have seen the past 4 procedures came to start Abby's IV. I was glad to see him because he is one of the only people who have had luck with her troublesome veins. He brought another nurse with him and together they searched and searched for a useful IV spot. They stuck her three times and finally got a good vein... but it took over an hour. While they looked, they also talked with me about getting some sort of central line in for Abby. They emphasized that with Abby's issues, her young age, and the poor quality of her veins, this process of starting IV's will only get worse with time.

This isn't the first time a porta cath or some other form of central line has been mentioned for Abby. The last ER visit and several hospital stays, various docs and nurses have made comments about it... after struggling to start an IV or draw blood. It's probably something we will be looking into over the next few weeks before her surgery. Perhaps both could be done at the same time.

They kept Abby back in the procedure room for much longer than usual. It was making me nervous, but the nurses assured me that she was fine. The last time she had her GJ replaced it only took about 15 minutes for the entire procedure.
Finally after 45 minutes they wheeled her back into the room. The nurse said he had trouble getting the tube in, not sure why. Possibly resistance from scar tissue or something. Thank goodness she was put to sleep.

At that point I was just glad to have her back! She was pretty sore for the rest of the day and a little wiped out.

"Nothing in my hand I bring, Simply to the cross I cling;
Naked, come to Thee for dress;
Helpless look to Thee for grace;
Foul, I to the fountain fly;
Wash me, Savior, or I die.

While I draw this fleeting breath, when mine eyes shall close in death,
When I soar to worlds unknown,
See Thee on Thy judgement throne;
Rock of ages, cleft for me,
Let me hide myself in Thee."