Wednesday, May 27, 2009

The Thin Red Line

About an hour ago, the Nurse Practitioner on duty for 10East today removed the central line from Blaise's leg. It only took a few minutes, and Blaise didn't even have to leave her crib. She didn't even really fuss...she just made eyes at us the whole time and kicked her legs enough to make life slightly difficult for her nurses.

I can't believe it's gone.

I don't remember if we ever shared this number with all of you on the blog, but at our first family meeting we were told there was about a 1% chance Blaise would ever come off TPN. We were told she might never eat. We were told that line infections would be a constant source of worry. We fretted about the day she'd be old enough to pull it out herself or compromise it in the million unpredictable ways a two-year-old can come up with and that a parent can't hope to pre-empt. We learned how to take care of the line, both of us worried that someday we'd slip and Blaise would get sick.

If there's one thing I've learned from all this, it's that small probabilities are NOT equal to zero.

The line may come back someday. We're not done. Blaise needs to get bigger and stronger and that's going to take lots of effort and attention. Still, today feels a bit like victory.

I can't leave off without saying something about our nurses on 10East. The real victory as far as I'm concerned is that we went this long with a central line without an infection, a broken line, or any of the other issues that cause serious problems for kids on TPN. Unless you read lots of blogs about children with lines (which of course, we do...and maybe some of you do, too), it's hard to grasp how impressive that is. Trust us, it's pretty damn impressive. The care Blaise receives is unparalleled and the line that came out today is a testament to the dedication and skill of the many nurses who have worked hard to keep her safe and healthy.

Anyhow, it's a rainy day in Boston today, so now that the big event has come and gone I imagine some naps and some Dr. Seuss are probably in order. We'll post some before and after pictures soon.

6 comments:

Lindsey said...

Hi, as the parent of a fellow Short bowel baby, I have been following your story. It's a great feeling isn't it, seeing them line free for the first time ever?
And for a baby that they thought would take years to tolerate food and likely need IV nutrition for a long time, my now 7.5 month old is at HOME, with NO line, and eats several fruits and vegetables with GREAT tolerance. hang in there, sounds like your time is soon to come. Congratulations on loosing the PICC line!

Aletta said...

Hey there! Glad we ran into you today. I just skimmed through the whole blog. What a year you've had! I'm so glad to hear things are going so well. Blaise is utterly adorable! We'll be hoping and praying for you guys and that she's able to come home soon.

anna said...

Yeah, I just got the link from Aletta. Read the whole thing. Glad to hear things are going as well as they are ; I'm almost glad I didn't read it until this long so I could see all the good news!

All my best

~anna folinsky

Jarasa said...

What wonderful wonderful news!! Blaise has an uncanny way of changing the odds in her favor. Methinks someday when she's old enough to do it legally, you should bankroll a trip to Vegas.

Elizabeth Conwell said...

Tell my little B that I love her and that Bloomingdales will be much more enjoyable now that this TPN thing is gone. Her and I will have to work on the education of department stores and designers since she has mastered the structure of an atom.
Also tell her that she is the cutest baby ever, although I don't think she needs to be told.

Gran said...

What an exciting day today will be! You've all come so far since the dark days at the beginning of the year. This little one has been the light that saw us all through.

Today is Blaise's day to shine all the brighter. Her first car ride, her first look at the Boston sky line, her first glimpse of the cats, her room...so many firsts!

Here's to a very bright and happy future for the Balas/Conwell clan.
So many people are rejoicing with you today.