Update on Garretts condition

tanzer13

I know I have not been around much lately. ?Since starting school again at the beginning of the month and now I am babysitting 18 hours a week, I just don't have the free time anymore! ?But anyways. ?Garrett had another GI appointment on Tuesday (one of his regular follow ups with her) and he also had a bunch of blood work done last Friday (again, his regular follow up blood work that he gets every few months). ?We found out at his GI appointment that while his bili levels are still down (not where they should be but still lower then they were in the past) his liver function tests still came back bad. ?So, that along with his lack of growth, he is finally 20 lbs,but of course since he is 25 months that means he is about the size of a 15 month old. And then there is his constant itching that is not being controlled by all of his meds, so we are now being referred to Columbia University?Hospital?in NYC for a consult about him having a liver transplant. ?The transplant would either happen there or at CHOP (Children's Hospital of Philly). ?Of course DH and I would be tested for a match first and any other family members but he will also be put onto the transplant list. ?

So, I know that was really long and thanks for reading it all. ?I know that many of you have been following Garretts case and thought you might be interested in this latest development. ?So it looks like it is still going to be a long road ahead of us but hopefully everything will work out in the end and we will come out on the other side doing a lot better than we have been doing for the past 2 years. ??

amanda&rob

Your family is in my thoughts. 

Rebekah1021

Thanks for keeping us posted. Your family will be in my prayers

sweetie1528

best of luck to you guys!

JOEBunny

Best wishes.  Those doctors can do amazing things.  DD was 20 pounds at 24 months, so I know how frustrating that can be.  I hope they can fix him up quickly!

Marchmamma

Prayers are headed your way.  We don't live that far from CHOP if you need info, let me know.

springmom

Thanks for the update! ?Garrett and your family will be in my prayers.

aprilmomtobe

Thank you for the update. I'll keep Garrett in my prayers.

PiperBride

Hugs to you and your sweet little guy!  I wish you all daily joy and love and nothing but happiness.

Sweet&Spicy

You little boy and your family will continue to be in my thoughts/prayers. You are all an inspiration for your strength, especially Garrett.

jennieliz

Good luck.  I pray everything works out for your little guy.

tanda627

You're in my thoughts. Keep us posted.

belle204

(((hugs))) Glad you're getting some answers and hope everything works out.

Best of luck with school too.

tanzer13

Thank you so much everyone for your prayers and thoughts! ?Seriously I am sitting here in tears right now from all of your words! ?I did not think this was affecting me so much yet (I am trying to not let it get to me until we have our consult and know more of what is going on) but obviously it is. ?Thank you all for your support!

debs1018

I will keep you in my thoughts. Columbia is a great hospital, you will be in the best of care. I wish you the best.

REOM

Hey Danielle,

Wow, you really have been a busy lady.

Good luck with Garrett's appts.  On a positive note, it's great that we are so close to so many great doctors and hosptials.  I hope they figure out what's best for Garrett soon so you guys can deal with it and move on.  I will keep your family in my prayers.

And good luck with school. Please let me know if I can help you at all, since I have already done the classes and have classroom experience too.

HUGS

Heidisean

I am sorry you guys are going through this...it must be hard!  Know that you and your family will be in my thoughts and prayers and fwiw, CHOP is and EXCELLENT hospital and if he goes there he will only have the best of the best!  GL with everything and keep us posted!

LanaM

Best wishes! your family will be in my thoughts.

shopgirl78

that is a lot going on- best wishes with everything!

AnneUCSB

Thinking of you. ?(((HUGS)))

MarchMom06

Sending you & your family lots of hugs & good wishes.

mrsterry

Poor baby!  Lots of hugs and positive thoughts your way.

Hooray2005

(((hugs)))

Sending lots of good thoughts your way - it's really tough to have a little one who's facing constant medical appointments, procedures, challenges - I admire that you're doing all of this while also going to school, babysitting, etc.  That's a lot of work!

If you do end up at CHOP please page me and I can try to put you in contact with the psychologist that works in the liver transplant area (one of my colleagues) - I worked at CHOP for years and think the world of the place from a patient care perspective (they're sooo good with their patients and families, and the cutting-edge medical care is amazing), and they provide great resources like psychological support for families going through the transplant process.  Hey, everyone can use a little extra support and someone to talk to in that big hospital environment

Hang in there... 

Zenya

Thinking about you all right now.

julesandross

Prayers for you, your family and that little cutiepie of yours!