Heyyyyy everyone! This is fun! My nurse Kim spoils me!!
Another picture Mom??? Really??
Attacking my favorite toy, Mr. Bee!
My neighbor set her alarms off again.. soooo annoying!
Sitting in my Bumbo or Bimbo as some have named it... Not sure if I like it yet!Lincoln's feeds were stopped today because he wasn't doing so well tolerating them... but they were set to be restarted this evening at 2 cc's per hour.. Just can't seem to get over this hurdle but he's working on it. He is very active these days and is really starting to enjoy his toys and being entertained by his nurses! I finally had the opportunity to speak with his gastro doctor today... not such encouraging news from her but at least we know a little more. With such little intestine left it is to be expected that Linc will have his challenges with digestion etc... unfortunately he is not doing as well as they would like him to be doing... they said it will be a constant and difficult/complex challenge trying to feed him... he will stay dependent on TPN for quite some time.. maybe forever. Their hope is that as he grows his intestines could possibly grow and enable him to tolerate formula... so far no such luck. The only positive is that his body (liver/lungs) are processing the TPN without major damage... this has 'bought us some time' according to the doctor.. not totally sure how to interpret that comment but whatever... :( Apparently at this age most TPN dependent kids are encountering serious liver damage and have major issues from the TPN.. Linc has lucked out that he hasn't had those issues yet.... the doctor told us he may end up being a candidate for transplant but that would be the absolute last resort and that the sad truth is that those kids suffer soo much and often end up needing to be hospitalized for life after the transplant.. she said that she would NOT want to put a loved one through that... :( ... BUT, Linc is strong and he is functioning just fine on TPN so far... so this could just be one more thing that he proves the world wrong about... he is that 'little fighter' so they say! She also said that she does not want Lincoln moved to another unit during the flu season so he can stay protected in the NICU from all the nasty flu bugs going around... despite all this craziness he is a very happy and content baby... and we absolutely love and adore him!!!
He looks like such a happy guy! Looks like Mr Bee is his punching bag. Good thoughts and prayers are with you all.
ReplyDeleteMary Napper
we are still praying for u all, i was so glad to see the little guy back in august!
ReplyDeletemuch love,
xox
janel and family
Thank you for still keeping up with the blog page guys. I know your lives are beyond hectic at this point and we all really appreciate the time you take out to keep everyone informed. I hate not being able to come and see him, but we all know that is what is best for Lincoln at this point in time. As always, stay strong you know this is just another (and hopefully last) hurdle Lincoln has to overcome. HE IS A FIGHTER AND ALWAYS WILL BE!!! I love the pictures Lora!! He is soooo stinkin cute! He really looks as if he is starting to get his own little personality...love it! The Halloween border is adorable also! Hang in ther guys and as always you know we are here for you...give linky dink hugs and kisses from his aunt tracy!
ReplyDeleteEthan had a transplant back in Feb of this year and he is expected to go home in November of this year. We will have been here a year, but he has not been in the hospital for the entire time. So that's not true about what the doc said about getting a transplant. You really should talk to some docs here at Cincinnati Childrens. The TPN killed Ethan's liver very fast! He was put on it at a month old and we were listed for transplant when he was 5 months old. Yes it does "buy you time". But what some docs don't understand is these kids get VERY sick VERY fast. I'm not trying to scare you or sound negative I just don't want him to go through what my son had to. You really should consider talking to the docs here at Cincinnati. It's a wonderful hospital and they saved my son's life!
ReplyDeleteHi!
ReplyDeleteI found your blog and wondered if you had heard of the Oley Foundation.
We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at www.oley.org.
In particular you might be interested in the numerous articles about TPN (also called HPN – for “home” parenteral nutrition); medical information, tips for daily living, and coping strategies.
Newsletter article index:
• http://www.oley.org/newsletter.html
You might also be interested in meeting other parents who have been there, done that. You can try these links below -- or feel free to contact me and I can make a more personal match. We have Oley families in the Columbus area, and a board member works at Nationwide Children's in Columbus -- Dr. Jane Balint. She is excellent.
• Meet Patients Section (try all three links)
http://www.oley.org/volunteers.html
http://www.oley.org/call.html
http://www.oley.org/forum.htm
Also, in case you run into trouble down the road, I wanted to tell you about a treatment for infants/children on TPN who have liver disease -- it's called Omegaven, and it's an alternative IV lipid source for kid's TPN. Obviously it’s something you’d need to talk to your physician about. Follow the link below to read more about it.
• Omegaven -- a new treatment for liver disease in children on TPN
http://www.oley.org/Omegaven_Liver_treatment.html
Finally – a great resource for home TPN.
• TPN Complication Chart
http://www.oley.org/charts/newHPN.pdf
If you have any questions or would like to be introduced to another family, feel free to contact me.
Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY