Happy Thanksgiving

We hope you all have a happy Thanksgiving!!

 

 

Little Liam send's his love

 

Prayer Request

We have a few CDHers in need of prayers and positive thoughts.

Little Lulani had surgery and is in pain. She had her re-herniation repaired and they found her adnoids were infected and the infection had spread. They werent able to remove her tonsils due to complication in OR. Please pray for healing and that her pain goes away. Continues prayers sweet princess.


Killian is having difficulties breathing when they try to lower the vent settings. There are no other changes. Please Keep Killian and his family in your prayers. Continues prayers sweet boy.


Continued prayers for all our CDH friends and family out there!!

If you have a special prayer request please post it on our Facebook page:
http://www.facebook.com/ShootingForLiam
 

Happy Birthday

Sir Isaac, Today was your birthday and we hope and pray that you had a great day!! Your a miracle and have come so far. Your so loved by your family and friends as well as countless who have never met you. Your survival of CDH and ability to overcome so much is an inspiration to all. Happy Birthday Sweet boy.

Feeding Pump "Flow Error"

What causes your feeding pump to beep "Flow Error"?

 

 

What usually causes the "Flow Error"?

 

 

What do you do to fix it?

 

 

 

 

 

 

Liam's pump goes off all the time saying "Flow Error" and there are a few causes:

 

1)His hose is kinked- Liam plays with the feeding hose so much it ends up curling up, kinking and cutting off the flow of his formula. It happens daily for us. I had become so frustrated because I just couldn't figure out how to prevent this or fix it. One night after straighting the hose for the hundreth time I finnaly said "forget this!!". I grabbed the tape we get for his guaze pads, took about 2 inches and wrapped it around the area that kept kinking. This little trick prevented the hose from re-kinking after I let it go and saved me alot of headaches.

 

2)Liam clamps off his hose- yes our little 16 month old smart pants has figured out how to clamp his hose off. This is the second thing we check for. The only way we've figure out how to prevent this is to make sure the clamp is hidden by his clothes.

 

3)Internal issues- this can be one of two things.

a)he's not tollerating the feeds and his intestines are pussing back. This happens alot with Liam. He's actually the only kid the nurses have seen actually pop the other port open because his intestines are pushing back.

b)his jport is litterally clogged. We recently learned that his formula and his biotin clogs up his jport not allowing feeds to flow. A GI doctor told us to use soda (ie Pepsi or Coke) once a week to clean the tube out. We push the soda through and let it set 15 to 20 min then continue as usually. This will prevent excess surgeries to switch out the tube. Make sure you talk to your doctor before you do anything though. We were assured the soda would not harm Liam but every case is different.

 

 

 

How do you trouble shoot your feeding pump?

comment or email us shootingforliam@yahoo.com

Question to ALL CDH parents...

Do you do Black Friday Shopping?

 

 

Do you take your CDHers Black Friday shopping?

 

 

 

When do you STOP taking your little ones out?

 

 

 

Liam is 16 months old and because he is medically fragile I do NOT take him out. I actually stop taking him out around end September to early October as soon as I see signs of people getting Colds and Flu's. And we always limit when and where he goes. His health and having our family together instead of seperated is more important.

 

 

**My new goal is to get the blog, tumblr page anf facebook page more active and informational. If you have any questions or advice please feel free to email or message us. shootingforliam@yahoo.com