New Plans

I was thinking today about how I thought I'd feel when Abby's Broviac (central line) finally came out.  I anticipated relief and a feeling of life returning to normal.  When it came out on Saturday, it wasn't quite what I'd hoped for.  Because it was a source of infection, what had been a great line and our friend, was the enemy.  Rather than thanks for all you did for us and good-bye, it was sorry sucker, you gotta go. 

Today, the infectious disease doctor said we'd be fine to stop the antibiotics tomorrow because it will be a week and that should be long enough with the line out.  The problem is that she also wants the subclavian line that the surgeon put in Saturday out.  She doesn't want it in more than a week.  I proudly reminded her that Abby kept her 7-10 day femoral line for 22 days.  The poor woman nearly fell out of her chair; then she reminded me that my luck had run out with lines. 

So began the debate as to whether or not a new line was necessary. 

My vote was no, let's see if she can handle it.  The doctor thought "no for now, but I doubt she's ready."  Abby apparently thought she needed it.  Early in the week, I foolishly asked how long she could go without any real nutrition.  Today, I can answer with confidence: 10 days.  She can look good for 10 days without much running in the belly.  She handled her feeds terribly today.  She was nauseated and bloated, which isn't incredibly unusual for her.  The return of icky color and lethargy along with very high residuals and low sats all day was. 

We've stopped feeds yet again and start TPN tomorrow.  Even as I write the words, tears fill my eyes.  I am so sad to be here again with her.  We were sooo close.  I'm trying to remind myself that it won't be the same.  We have the right formula, we know how she works, but still.  She's taking less now than she was when we left the hospital last time.  She has to be here through Friday, so I'm still holding out hope that she'll go home only on tube feedings.  I know it sounds naive and just a little denial-like.  Perhaps it is.  I don't care.  I don't want to go home on TPN.  I want to move with my husband---and again --the tears. 

Emily is better.  She woke up nauseated, but has slowly been able to handle liquids today.  The rest last night did her good.  She must have had a little virus.  I can't tell you how thankful I am that she didn't have to come to the hospital today.  See, that's how I'm feeling about Abby.  Last night I was sure Emily would end up here today, but she's safe and sound in her own little bed.  I can't begin to imagine how Abby could possibly end up at home without a line and probably TPN, but she could.  She could turn right around and do great. 

It's certainly a set back to start TPN again, and I can't help but feel disappointed.  The Lord is in control and not surprised, even if I am. 

I am counting my blessings too; knowing that there are many and undoubtedly more than I can see.  Even if it's not how I hoped it would be, Abby is safe.  If you recall sweet Jordan I wrote about here being so similar to Abby and dealing with the same issues.  He went back to the care center where he lived shortly before Abby went home.  His bowel perforated last month.  He died surrounded by the nurses here who loved him and the people who cared for him everyday.  My heart is heavy with the loss of our young friends recently.  It's impossible to distance myself from it, and yet I don't know what to do with it.  It's such a long sad good bye. 

I sit here not knowing how to close.  I'm longing for some faith filled statement of trust, and it's there--the trust--that absolute believes in the sovereignty of God never leaves.  But so many other things swirl around as well.  Fear, that I'm always reluctant to admit.  Confusion that I can't sort out.  Sorrow, for so many little losses each day.  Longing, for what I'm not exactly sure.  And Love, so much love for that little girl in that hospital bed. 

Dear sweet Lord, as I've prayed for more than 13 years, hold my girls in ways I can't.  Be with them in ways I don't understand, and love them as only You can.