Tuesday, August 10, 2010

What we have here is a failure to communicate

We saw and ENT Specialist and 2 CF doctors before we decided/agreed to the procedure that Drew is having done today. We asked all 3 of them, as well as the folks who called to pre-register us and our nurse who called on Friday to confirm everything if we would have to stay overnight. The answer was a unanimous no. They why, you may ask, are we staying overnight? Apparently it was overlooked that he isn't 60 weeks old (born at 36 + 20 wks since he's 5mo.) and anesthesia needs to monitor him overnight. I wouldn't care about staying here had we planned for it! We have no meds, no food, no clothes, nothing. We were planning on being home before dinner. So my mom has Lily and Ella with her broken leg, I'm here at the hospital, and Martin is at work. He'll come here after work and ill go home, returning tomorrow to sit with him. My mom will bring the girls over around lunchtime as I have to take Ella to get her cast on at 1. Hopefully that will go quick because Drew has a CT scan scheduled for 3:30...

Which brings me to how today went. Not as planned. They knocked him out and looked down his throat to see his trachea and his bronchi (lower airways/tiny lungs) and its not really malacia. They said that it looks like maybe there is an artery compressing his trachea which would likely need to be surgically addressed. They're doing the CT scan to see if they can determine what's causing the compression since its not malacia like they had suspected. Then they looked into the lungs and the doctor said they looked different, like "nothing he had ever seen before". He said that he's been doing this for 30 yrs and had never seen lungs that looked like Drew's look. It wasn't terribly concerning in the near term, as his oxygen levels don't seem to be affected by this. However this doctor didn't know how it would affect his ability to clear his airways, a critical element of stayig health with cystic fibrosis. Keeping the airways clear of mucus and thus bacteria is the best thing for CF. With him being so small and so far unaffected by any bacteria, its hard to say whether or not his abnormal lungs could be causing any harm. There wasn't really any conclusion on that conversation. Just that he was going to have to talk it over with some colleagues and figure out what they wanted to do.

I've got a couple of thoughts or feelings on all of this. First, this sucks. I wanted normal, common malacia. I don't want it to be an artery pressing on his airways, or anything pressing on his airways that would need surgical intervention. Hasn't the poor kid been through enough? I'm scared of what they're going to find or what they might have to do. Absolutely none of this has gone according to plan. I'm scared that the doctor hasn't ever seen lungs like his before. What does that mean? For now? For his future? Why is this all happening?????

I'm selfishly thinking about how I'm going to do this by myself. Martin has to work. Our families have things of their own going on. They can't stay with us forever. I know they will be here as much as they can, they already have! I need to learn how to have 3 kids. But what if he has to go back into the hospital? I guess we will all just sit in here with him. We can pack a bag of toys and movies and all hang out here for some time. By that's not fair to Lily or Ella. But its not fair to Drew to not have me here. I can't move back to Philadelphia when Cincinnati Childrens Hospital has the number 1 CF Center in the country and perhaps the #1 pediatric respiratory team in the world (second to London).

I guess we will see what the CT scan shows and take it from there. We will get a second opinion and maybe even a third. It will be a pain in my ass, having to either find someone to watch the kids or packing them all up and bringing them along , but its his life and we owe him everything we've got. I wish I could put all of his doctors (CF and all other pulmonary docs) into a room together and listen to them debate it and then make a decision. I understand that there are different opinions and potentially different options but I just want to understand and see different perspectives and make our decision.

This is so not how I thought things would go. No humor here today, just a worried mom with a heavy heart.


  1. Erin-you are unbelievable. Keep writing blog entries, I am sure it helps in more ways than one--mentally and simply as a way to keep track of your crazy life right now. Just keep putting one foot in front of the other, you are amazing.

  2. i know what your going through the poking the prodding to only await an opinion you hope is the right one..I am praying that things will get better and you will get a dx that you can deal with..And praying for help for your family during htis time...

  3. I agree - you are an amazing mother.

  4. Erin, you and Martin are amazing!
    Like the Energizer Bunny, you just keep going and going. You both are stronger than you realize!! You take hits and keep pushing back. So thankful for your wonderful parents - so glad you have them there. Praying for all of you! Sweet Ella, a trouper like her Mom! Love to all.