Friday, November 21, 2008

NO MORE TPN!!!!

Well, in the the immortal words of the late great Jerry Reed, it looks like 'We're gonna do what they say can't be done....'

Yes, as of December 1st 2008, Ellie Brogan is going be OFF OF TPN!!!

(It is okay at this point to stop reading, stand up, and do a little happy No TPN dance. It's like the poop dance, just better.)

Ellie had her first clinic appointment in two months yesterday at Children's. Even though we were anxious about her weight, after a round of nasty colds and mystery ostomy dumps over the last few weeks, she still managed to gain 500 grams (about 1.1 pounds) and grew an inch and half.

'Good growing, kid.'

So after a the usual round of unconventional horse trading, bargaining and negotiation with the doctors pushing to be aggressive and me pushing to be conservative, we worked it out that as of December 1, our weekly shipment of TPN would no longer include TPN and that she would move on to seven nights a week of D10, (10% dextrose solution) to keep her hydrated and give her a tiny amount of sugar. I insisted that we start this after next week's holiday. I just didn't want to run the risk of anything going wrong and then spending the holiday weekend at "The Inn" with a skeleton crew of doctors and nurses piecing things together. No thank you!

This is huge news for a kid with a high ostomy and a small personal victory for us. The doctors that were pushing for these big changes yesterday were the same doctors that we fought with in 2006 because they disagreed on the use of an ostomy to resolve Ellie dilated bowel. They firmly believed that this approach could not work, that she would have constant issues with hydration, mineral balance and skin breakdown. They essentially told us that she wouldn't grow or thrive with an ostomy. And would never come off of TPN.

Have you seen our girl lately?

All of this is nerve wracking for Gib and me. We have seen lots of kids go off TPN and then need it again and had their parents be crushed by this step backwards. We are going into this as another experiment with Ellie. We know that it may not work and she may lose weight and need TPN again. We are cool with that. Really.

We won't be devastated if she needs TPN again. It really won't change our daily routine all that much- we are just down to one IV pump a night instead of the two that we have on TPN nights now. This is all easy to say right now but we'll see we feel if it happens. We also know that when we do reconnect her bowels, she will probably need to go back on TPN while her intestines learn to work together.
Ellie playing with cellebratory ballons from Aunt Kate

One thing happened yesterday as we were leaving clinic that really helped this whole thing sink in. Usual clinic appointments include a visit from Kathy Gura, the pharmacist and Omegaven guru, she will check in on our girl and drop off a large bag full of omegaven for the month ahead. Yesterday she dropped it off as usual and then after the changes to Ellie's TPN were decided, a nurse came back in and grabbed the bag of omegaven saying, "you won't be needing this, I guess."

We are going to have one of our clinical calls with our nutrition team at NutriThrive next week to talk about vitamins, minerals, fats and all the fun stuff that we have to worry about now that she is off of TPN. And now we also need to start looking into fish oil suppliments, because no more TPN also means no more white gold, Omegaven.

All in all we are very excited, and can't believe this is finally happening. But, to keep ourselves grounded we would like to invite you all in embrace a phrase with us:

"She is off of TPN, for now."

YAHOO!!!!!!

20 comments:

K8 from CT said...

Yee-haw! I wish you could see my uncoordinated happy dance and tears of joy. What exciting news. Continue to prove that yes you can!! Huge congrats.

Anonymous said...

Wow! that's all I can say... WOW!!!

You guys sure know how to grow'em! :D

Jessica
www.caringbridge.org/visit/eithenerosehilliard

Yuko, Randy, Max, & Kai said...

Hooooooraaaaaaayyyyy!!!!!!!!!!

Anonymous said...

Oh happy dance!!!! SHE DID IT!!!!
Katrina Nagy

Jen Rath said...

Congratulations! That is absolutely fantastic and we are so, so happy for you all! Fish oil supplements work pretty well, minus the smell. Austin's on 15 ml/day of the liquid by Nordic Naturals (Dr. Puder recommended this brand to us).

Jen Rath

Stephany said...

My heart is filled with excitement and hope for you all as you start a TPN free journey. Those are some well deserved balloons Ellie!!

Anonymous said...

WOOOO HOOOO!! (also joins in on uncoordinated happy dance)

I also have to say that I LOVE the pictures of her in this post...and from a (photography point of view) especially the first one. It should be blown up big as a poster and hung up in celebration of all the hard work you've put in. Here's hoping the stumbling blocks are small and far between.

Amanda

Leon Jordan said...

I haven't visit your site lately and today when I read it this is what I caught...

No more TPN!!!! Wow great great news!!!
How cool is that! The time is finally came...
Im happy for you and Ellie. She had grown a lot and becoming a real big girl.

Great news too, my son Leon is on 18 hrs on TPN now, he will be on 12 hours of TPN in next two months.

Im dancing happy dance right!!!

Jacky

Sharron April said...

Great News! Go Ellie! Congrats parents!

andrew_maruska said...

Congratulations! We will let our most skilled dancer, Connor, take that part of the celebration!

Thanks again for leading us to Omegaven which led us to a healthy kid off TPN too!

Rhea said...

THAT IS AWESOME NEWS!!!

Holly said...

WhoooHOooo! So excited for you!

Caleigh and I just did a dance! Caleigh has been off of TPN for 2.5 weeks now! It's a great feeling. Not much changes except for that yellow bag doing a disappearing act, but the knowing and feeling is just amazing.

We too use Nordic Naturals liquid for Caleigh, 2.5ml a day. You can find it at Whole Foods.

Congratulations again!

the crucible said...

Congratulations again and again for breaking new ground everyday! OMG!!!!
xxoo!

Becky said...

yay yay YAAAAAAAAAAAAAAAAY!!!!!! So very happy for this ... she's amazing ... this whole journey is a-friggen MAZING!!!

love you

Karen Owens said...

Very Cool!! That's Amazing!

placedechoix said...

Congratulations! All your hard work is paying off! Best of luck for the next year... we'll be waiting to dance for the 2 year anniversary!

PsychMamma said...

What wonderful, WONDERFUL news!! Congratulations! And I'm glad you couldn't see my happy dance. It was a bit embarrassing, although full of joy.

Wishing you all the best and continued success!

mini and brother said...

Best news ever!! Congrats!
She is beautiful.
Happy Thanksgiving!

Thomas Family said...

AWESOME NEWS!! Go Ellie Go!
Ellie has been an inspiration to us since we found your site the week Nora was born. We are so very happy for you guys and are celebrating with you.
Congratulations!

Dr.Rutledge said...

Hi Abby,

Congrats! I'm an academic physician (formerly at Harvard and Stanford) who found your blog while looking for the best health writers. I think your writing is great! I would like to feature you in the Children's Health Community on Wellsphere, a top 10 health website that has well over 2 million visitors monthly.

If you would like to learn more, just drop me an email to Dr.Rutledge@wellsphere.com