Thursday, August 03, 2006


Today was a purely medical day...sorry Max! This morning we were dealing with the equipment company and working through some issues with his oximeter and sensors. It broke yesterday and so we didn't have anything to measure his sats last night. Fortunately we had a nurse, so she kept a close eye on him. But with this current cold, I definitely wanted to get a new one ASAP.

Then the entire afternoon was spent at the doctor's office. Max is still "presenting" respiratory distress with labored breathing and a respiratory rate often in the 80s. However, he still continues on as though all is well...playing, smiling, moving around. The doctor was concerned too and immediately wanted a breathing treatment for him. However, that produced little improvement, so she ordered another blood draw for electrolytes and a chest xray.

Since Maxwell is breathing so fast, he actually is keeping his bicarb quite he is compensating well on that issue. They are concerned though that if he continues to breathe this fast, he will tire and not be able to rid the body of the CO2. So we will be watching for that. Fortunately, the xray didn't show any major pneumonia spell...just the same ol' "chronic lung disease."

The doctor called our pulmonary team at Children's, and they decided to try another heavy dose of steroids and some additional breathing treatments. They explained the negative effects of too many steroids (Max was just weaned off nearly a month long course a few weeks ago), but really there is no choice considering the situation. Hopefully this helps and it will only be for a week. If we don't see improvement over the weekend, pulmonary wants to see him.

As always, Max and I managed to have some fun in between all the tests and consultations at the doctor's office. :) I love our connection and our ability to have fun whenever and wherever...he absolutely amazes me. He makes me do the silliest things and I could care less! Anything to make him smile! People always tease us about how silly we are together, but that's ok! (Sara, you are one of them!!! :) hee hee!)

Max loves, loves, loves the white paper they put on the examining table so today I rolled him in it and he thought it was hilarious. Then he was going to town pulling my hair and eating my face...he can give quite a strong "Max Attack" these days! The doctor kept telling us we were having too much fun for a doctor's office! :) I told her this is the only way we get through days like making sure we get lots of giggles!!! :) She was cracking up at our games. Max was eyeing her hair too, but instead got a hold of her stethoscope and would NOT let go.

It's funny how everytime a doctor walks into our room, they almost always are chuckling at us! Either we are dancing, doing therapy or I'm telling him how incredible/beautiful/miraculous he is.

On Monday, the audiologist was teasing us because I was giving him a pep talk before the hearing test and she said that she and our local speech therapist were talking about how silly we are together (in a good way...I hope!!!). She was telling her how recently when she came for a home visit, she could hear me singing with Max practically a block from our house! A little embarrassing, but hey...I want him to be able to hear me! And he does respond, so that is good for "receptive and expressive communication" (two goals of speech therapy), right?!?! :)

Well, I think I best run. Max is playing beside me right now and just chugging along...I don't know how he does it. If I breathed that fast for more than a few minutes, I would pass out! He is one tough cookie!

* Look at how cute and grown up Mighty Max is in his first college t-shirt and jeans! He's sporting his mommy's alma mater, Ohio University. This was a gift from the Koenig gang (a sorority sister/roommate/great friend)! Thanks guys, we love it! :) I totally forgot to post photos from our fabulous weekend together...I will try to later. Thanks again for EVERYTHING! :)


elle said...

to cute

Steph said...

I think it's great you and Max have play time on medical days... a nice way to make sure he doesn't associate doctor visits with just doctors. And no doubt helpful for you in making it through those days.

Your connection with Maxwell is amazing and fun to the singing out loud story!

Sara B said...

Yes, I tease you...I admit it. But I also admit that I have never, EVER seen two people so connected and so in love with each other...the way he watches you, the way he responds to you Amy, is nothing short of amazing. So I am sure he loves the make out sessions just as much as you do. I love you both!