Saturday, April 25, 2009

Gas, gas go away!

Ava is having such a hard time with all of this gas. We are done with the Flagyl until next week. I decided to rest her tummy today and no formula. She ate mac and cheese on her own today along with a few noodles. I also gave her yogurt in her g-tube. Her tummy was quite large last night….53 cm’s.  I got all of the extra air out with a syringe . She felt better. I also started simethicone drops for her tummy/gas pain. I'm not sure they work but I can't just do nothing.I had her on Pedialyte most of the day yesterday as her tummy was puky but she onlt threw up about 65 ml’s. Most of the night I set her g tube to drain as her stomach rumbled like loud thunder…..then she would get bad cramps. She rolls over to her right side to help alleviate the discomfort.She whines and cries then drifts back to sleep. Then this morning her stomach measured 50 cm’s….that is much better but still higher than normal.

I am so frustrated. What is going on? I understand the bacterial overgrowth theory but why so MUCH gas? This is ridiculous. She looks like a pregnant lady, no kidding. She  never complains unless she knows she is going to get sick and then she puts her head down and gives me those puppy dog eyes. It kills me that we can’t help her. I know we will be back in the hospital as she is now 24 pounds. I just hate to have to go back. For one she knows the hospital means “pain”. Number two the germs…everyone that enters our room could bring something in. No matter how many times I use the wipes on the door, knobs, chairs, bed rail, computer, and every other touchable thing in the room. I fear leaving the room to get ice for fear I will bring something in on my clothes. Oh and Number three it just pain stinks to be away from my family and my house. As I write this my eyes fill with tears. When will this end for my baby?

Then part of our family just doesn’t get how sick Ava truly is. They ignore it as though she is fine.  I panick when anyone enters the house that does not wash their hands. I HATE living life like this but we have NO choice. She must be protected. I thought I would get better after her line was removed. I haven’t.

I want to thank my cousins Mindi and Heidi for getting me out of the house. We went to see a movie and boy did I need to get out! Brian was happy that I got away although he became a wee stressed. She is still alot to handle.

Please pray that this tummy gas leaves. Ava is a trouper. Now if I thought she was in a lot of pain we would already be at the hospital. She is handling it all but I am waiting for it to get worse. Her tummy measures 52 tonight. Her heart rate has been good. I tell God if she needs help now let her heart rate show me as He has done each time before! Pray for Ava.



Lacey said...

Praying the gas goes away and she feels better. I wish someone could tell you what is wrong, that is the worst part. When you know its something but what? Argh

Anonymous said...

Terri -

We will keep you all in our prayers.

This tummy blowing up thing is soooooooo frustrating! While Christopher dis not have CHD, he does have many of the same tummy issues that you are describing. Have the docs tried bactrim along with the flagyll? or gentimiacin? They tried that in the hospital with Christopher. It sort of killed everything - then they started killing off one type of bacteria every month. Flagyl only covers one type of the bacteria. It may be knocking that down, but allowing the other to gain momentum. The other thing they told us was that the bacteria is feeding off of carbohydrates.
While Christopher is still totally on formula, we were adding rice cereal to thicken. Now we can't add ANY thickeners because they are all straight carbs (Thick-it, simply thick, etc)! I am not sure how you would keep Ava from eating any carbs - what kid doesn't like mac and cheese when they are hungry?

Talk to your docs. Let me know if you want to put in a phone call or have the docs put in a phone call to Christopher's GI up in Wisconsin (NOT the crappy one - his boss!LOL!)
His name is Dr. Colin Rudolph. He LITERALLY wrote the pediatric GI books that all of your docs are studying! He is also THE expert on this bacterial overgrowth.

If you want to e-mail me, I can send you all of his info. Maybe it would help.

Hugs and prayers!

Steph and Christopher in IL OurLittleMan

Stephanie said...

I know it stinks, but if it is a bacterial overgrowth, the live bacteria in her digestive tract will cause the gas. Ideally, as the medication kills them off the gas will lessen but as you know things usually get worse before they get better. Hang in there, I know it's so tough to see your baby in pain. My munchkin suffered for months on oxygen not being able to breathe or eat before his diaphragmatic hernia was finally found (by accident). Even now, two years after his repair we still deal with issues related to all his body suffered from it. That combined with Down's related heart and lung disease.. we feel your pain.
God Bless you all and I hope Ava is feeling better soon.