Tuesday, March 2, 2010

This is really long

Well, Olivia is fine, she has a minor sinus infection but the doctor put her on antibiotics just because of the upcoming surgery. With spring right around the corner I am going to go out on a limb and say that this will be her first winter without pneumonia.  She finally has a great doctor and an excellent, aggressive asthma action plan ; with every follow up her small airways grow stronger and stronger. I remember telling people when she was little and we really had no control over her asthma that is was one thing to worry about your kids having a cold but a totally different thing to worry about whether your kid is breathing. That would be God's sense of humor again.

Speeking of kids and breathing, Tomas has a sinus infection but his lungs are clear (hooray!). Dr. B started him on antibiotics and ran a culture because she said he smelled like pseudemona. I didn't know it had a smell, I did know he has it but it has been a very small amount until now (and hopefully still is). She also ran an RSV test even though he gets the Synagis shot. He was due for his next one next week so she said there is a small chance it could be RSV, which would delay the surgery for 3 weeks.
And speaking of the surgery... Dr. B discussed the results of the x-ray and right lung issue. She spent a lot of time going over the films with the radiologist and they feel it is not his lung trapped with air that has herniated through to the left side, but his intestines that have herniated up to his chest cavity through the hole created by the hiatal (stomach) hernia. That makes 3 hernias in his diaphragm, part of the stomach  is up, part of the intestines are up, and part of the liver is up. She spoke with Tomas's GI and this new info was enough to get Tomas a clinical diagnosis of Congenital Diaphragmatic Hernia.
There are 2 main types of CDH,
1. Bochdalek hernia - an opening on the back side of the diaphragm, most often on the left side. The stomach, intestines and liver or spleen usually move up into the chest cavity. This account for around 90% of CDH cases.
2. Morgagni hernia -  This type is rare and involves an opening in the front of the diaphragm, just behind the breast bone usually on the right. The liver or intestines may move up into the chest cavity. This only accounts for 2% of CDH cases.
I could not find any statistics on what the odds were of having them both, but Tomas does. Stomach and intestines are on the left and liver is on the right.  Initally, Dr. B wanted to do either a barium study or a CT scan to confirm, but the GI said why use more radiation, the fix for it is surgery, and the surgeon is going in that area in 8 days. So in the end she just faxed everything over to the surgeon and I'll call to go over everything with him. I need to call pulmonology tomorrow to get the results of the RSV, and bring him back on Monday so she can clear him for surgery on Wed. He needs to be on the antibiotics for two weeks, but really he probably would have been on something post-op anyway. He is sleeping on my shoulder while I sit and type this out because he is too stuffy to lay down
Here is some of what Wikipedia had to say ( you can read it all here  http://en.wikipedia.org/wiki/Congenital_diaphragmatic_hernia#Morbidity_and_mortality ) :
Morbidity and mortality - Congenital Diaphragmatic Hernia has a mortality rate of 40-62% , outcomes being more favorable in the absence of other congenital abnormalities. Individual rates vary greatly dependent upon multiple factors; size of hernia, organs involved, additional birth defects or genetic problems, amount of lung growth, age and size at birth, type of treatments, timing of treatments, complications such as infections and lack of lung function.
Clearly the 40-62% had me a bit freaked but when I read more it turned out that most deaths occur in infancy and are due to lack of lung development. I am praising God tonight for a full term baby with fully developed lungs. I am praising God tonight for a little voice inside my head that kept making me nag at the hospital Dr.s until they had a pulmonoligist round on him when he was 5 months old, even though they kept telling me his labored breathing was just a Downs thing and would go away with time. And more than ever I  am praising God tonight for this first year with Tomas.


  1. Oh, so sorry you have sick kiddos on top of 'regular life' - no fun. Hope everyone is feeling better soon :)

  2. Wow! What are the odds of Tomas having both kinds of CDH, definitely a litle thing called "our kids always get and do things their way" and Gods sense of humor.
    Remember his name is in good hands!!!
    Sending prayers

  3. It just always goes back to "Be still and know that I am God." How blessed we are! He always guides us.

  4. Love when our children fall in that "what are the odd's of that",category,don't you?Most of all I love hearing that you were persistent with your mother's intuition.I cannot tell you the number of times I have seen mother's,myself included, save their children's lives because they followed that voice that led them to finding what other's just could see.

    His voice,as I wrote to someone earlier,can come in resounding booms or in subtle whispers.The gift we carry each day, is the ability to hear it.Our faith allows us that ability and for that gift of faith,I remain forever grateful.

    I vividly remember,before Zoey was born,as I hit various medical issues with the other 5,repeating.."No big deal.We'll get through it.There is SO many worse things out there." .... boy did I find that out the hard way!I continue to live by one of my favorite Mother Teresa quotes:
    "I know God will not give me anything I can't handle.I only wish He didn't trust me so much."
    ~Mother Teresa.... I wonder if He got my memo yet!Hope everyone is feeling better soon.

  5. You are so funny. I in no way can even begin to tell you how I did it. Divine intervention. If you give me your E- mail I can send it to you then you just have to save it on your computer and upload it to your blog. Actually just e- mail me then I have your address