Thursday, April 30, 2009

Holding our breath of hope.

We met with a new GI doctor today in Iowa City.

As soon as we got into the hospital parking garage she became suspicious. Her eyes got sad. My Mom and I tried to tell her that “this” was only and appointment and that we would be able to go home right after we were done. She was not buying it. She started worrying, I could see it in her eyes. Poor baby she just knows TOO much, doesn’t she?


Dr Ebach is very nice and so easily approachable. I instantly felt at ease and able to discuss Ava’s problems. Our nurse practitioner really helped fill her in on Ava’s past medical history. (Thanks Josh….God knows there are a TON of it!) She started off by asking  me what I wanted from a GI doctor. I said my goal was to get on the same page and to get my daughter better. I sometimes feel I am out in left field. Her last hospital stay…I felt I wasn’t kept in the know…..or perhaps I didn’t want to even remotely think her problems were related to an obstruction, so I wasn’t listening. She showed me the x rays from Saturday night when she had been admitted. It actually took my breath away. WOW she was FULL of air. Dr. Ebach said that by the x ray she would have thought it to be a total obstruction. They called it a “partial” I suppose because she had still had a bowel movement that day. She had NO air in her large intestines. Pointing again to total. I usually view the x rays but the last few times I have not asked to see them. I guess I was just scared.

So here is what is really going on with Ava. Last week Ava was pretty much totally obstructed. That is why she was again throwing up the “poop” green bile. However when they decompressed her intestines. (Hooked her g tube to drain) She felt better and was less distended. Then a few days later they started the Flagyl. This is an antibiotic that does not get absorbed into the body but just attacks the bad bugs. It also has a medicine in it to help with the inflamation.

In simple terms, think of Ava’s bowels like a balloon. When the intestines become big /full of air it is most like to kink or close off, especially if it has a scar tissue in the center.  BUT if some of the air is released it stays more of a constant shape on both sides helping it to stay open and function normally.

Because there IS a thin spot in her small intestines, things start slowing down. Things get backed up and these “bad bugs” start multiplying rapidly, causing her to be full of air then the bacterial starts to spread and produce more bad “bugs”. It makes horrid gas and cramps, that cause her a lot of pain. IF we can control this “cycle” with antibiotics (Flagyl and Gentomycin) combinations perhaps she will not get so full of the bad bacteria and so full of air. We must try to stop this obstruction from happening WITHOUT surgery. The more times they go into to “fix” something the more scar tissue she gets…..making it that much more likely that more scar tissue grows over causing a ………BOWEL OBSTRUCTION. See the cycle?

Since learning this angle of things I feel more frustrated with this “whole” thing. Right now I HAVE to hold onto the facts.

1. Ava is feeling better.

2. She is eating GREAT.

3. She is having regular bowel movements.

4. She is FULL of energy.

5. She is not throwing up anymore!!!!

6. The medicines ARE working.

We took another x ray today to see if she looked any better on the inside. She still has air in her small bowels but less noticeable then a few Saturdays before. Her insides will never be normal and that is SO hard for me to accept.

So although surgery may be an answer it is NOT thee answer. Why I named this post, “Holding our breath of hope” ? Over the last 2 and a half years I have been giving hope to other congenital diaphragmatic hernia parents. I tell them to hold onto all the hope they can muster in their hearts. DON’T EVER GIVE UP HOPE! I feel that I need to live MY words. I need to take a HUGE deep breath of hope.  God is already helping Ava’s body in ways I can’t see. I just wish I could fix this….make it all better. All I can do is have the faith and knowledge that God WILL help Ava overcome these medical obstacles. I have asked him and now it is time for us to just believe it will happen completely. “Ask and ye shall receive.”

She is such a good little girl. She waits so patiently….watching Wiggles and Little People!



Dr. Ebach doing her first exam on Ava.


Mommy and Ava snuggling! Ava is still a bit worried she will have to stay at the hospital.


I asked Ava’s speech teacher about sign language since her talking has taken a back seat to all her medical issues. (I thought if we taught her to sign she would never want to talk.) However I am getting worried she may have a speech problem. So we will be teaching her to sign small things. She really needs to start communicating with us. Yes we understand her but it is frustrating to figure it out.

She has been throwing fits…..tantrums. I am NOT used to this at all. She will cry and scream. Her face turns bright red. Lexis and Emeline never did this to me. I know she gets frustrated and I just think signing will help her feel better too. I also have to remember she IS 2! AND two year olds want things, when they want them! IN this way she is normal.

Thanks for reading and looking at the pictures. Please pray Ava’s intestines continue to see improvement with the antibiotics, so that we can avoid another surgery. As always I will keep a close eye on her and keep you updated.

“In ALL things give thanks.”



Lacey said...

I'm so glad she's feeling better. Praying that those bowels behave themselves.

Stephanie said...

I'm so relieved to hear that Ava is feeling better. You are absolutely right about the sign language. My munchkin is nearly four and is still basically non verbal. Oh, he "talks" just not in a language we can understand so it can make things frustrating for him. His speech therapist started introducing signing a couple years back, starting with simple signs and working up a bit. He isn't a fluent signer by any means but he is able to communicate his basic needs and that makes learning to talk much less stressful and frustrating for him. She's the perfect age too, she should pick it up easily and you'll be surprised by how much more relaxed she becomes once she can make her needs understood.

Leah-in-the-Kia said...

I have just found your blog, my name is Leah and I live in australia, my 4th child Fallon was born with CDH - left sided on 27th March 2003. The CDH was not confirmed until she was 11months and she was operated on oat 15months. Her left kidney, spleen were in her chest cavity, the kidney rotating at some stage and actually blocked the hole and saved her life which is why it took so long to find. She was a very sick baby until then, always in out of hospital, couldnt roll, sit, crawl or walk until she was 21 months. Fallon is now 6, and hasnt looked back, she has had a great last 3 years with no illness, she is right on target with her mile stones, just started school and dance class.
My email is if you would like to email me
mum to Jake 12, Britt 10, Laine 8 and Fallon 6

Bryan said...

Glad she is continuing to eat well and seems to be doing better. And I'm glad you liked the doctor you saw. It is such a relief to be comfortable with your medical team and feel like part of the team.

Praying for continued healing!
Pam Winter

My Three Sons said...

I have been blog slacking lately and I'm so glad to see that Ava is doing well. I will say a prayer that she continues to eat and poop for you. Her little pig tails are so cute.

Darcy said...

We did signing with Owen because we were seeing some of the same things, he couldn't communicate with us and so he was having more tantrums and frustrations.
I made a chart of some of the most helpful signs for us (more, milk, juice, help, please, thank you) and he was able to use all of those. His early intervention therapist said that the signing actually will help the speech because it will create pathways in the brain that encourage speech.
With Owen we finally got to the point where he was learning words more quickly then signs so the words have taken off and basically no signing anymore.
It was a very helpful bridge for us to get to where he is now.