Wednesday, September 14, 2005


The doctors really took my requests seriously today...and the tests are already lined up and happening! It certainly pays to be aggressive.

Max had his abdominal ultrasound this afternoon...doctors are explaining results to me tomorrow. One thing the tech noticed right away though was a change in the kidneys due to the massive amount of diuretics he is receiving. They thought there might be a small kidney stone...supposed to know more tomorrow.

Tomorrow is a very big day...Max has a followup audiology appointment to test the right ear. The canal was too small to test last time. I am hopeful for good results, but I have a feeling (I have no reason to back this up) that there is hearing loss in that ear as well. Hopefully it is only mild to moderate loss. I just have to keep remembering that we are fortunate he is not completely deaf, as is the case for many CHARGE kids. We can work with partial hearing loss...I am not happy about it but we can deal with it.

I made a tape of me reading stories and talking with him so that when I am not in the room, we can play it and he hears my voice. Lord knows he heard it enough in utero, so it must be a comforting or at least familiar sound! :) The nurse and I were talking about it today...they all get a kick out of my tapes...and she was telling me how I made her totally weep when I was talking on the tape about wanting Max to hear me say "I love you." It would break my heart if he wouldn't be able to hear those words from me, but she reminded me that there are other ways to tell him that even if he did have profound hearing loss. (We do know that according to the previous tests, he only has a mild hearing loss in the left ear...which was fairly good news considering what it could have been. However, we won't truly know the true level of hearing until he is older and able to be more involved with the tests.)

On Friday, he has an Upper GI test scheduled...that should help determine if there are any formation issues or how severe the reflux is.

He has another opthamology appointment next week to test for retinopathy, a common eye issue with preemies. Max was already tested once, but I wanted a followup appointment...just to make certain. I think his vision is good...everyone comments on how alert and attentive he is and how he is constantly looking at everything...and of course how beautiful his big eyes are!

I talked with Max's ENT doctor today and we are most likely going to remove his nasal stents on Friday or Monday. I am VERY excited about this in some ways because he will once again be able to receive his oxygen via the nasal canula and not the face mask...AND it is much easier to hold him in different positions without worrying about the stents or mask...AND there will be a lot less care involved in the suctioning of the stents. This would change the care significantly for the better...I cannot even begin to tell you what a difference. However, if we are taking them out too early, the passages may begin to close again and he could wind up back in the operating room. This was a very stressful conversation because no one can determine how long the stents should truly stay in...does another month or two make a difference or are the stents causing more problems than they are worth???

Care conference was scheduled for tomorrow but without of course I raised a fit and said "nope"...I want EVERYONE there. So we are meeting next week to review the whole scenario and plan out Max's upcoming weeks and months.

It was a busy day at the hospital with all the planning and test scheduling...and they made some changes with Max's monitors so they are beeping nearly constantly. After just a few hours, Eliz asked (somewhat jokingly) "can we turn that's so annoying and it's stressing me out!" I said "welcome to our world!" But she is right, the beeping is crazy! The monitor beeps when his oxygen drops too low and now when it is too high (make the heart work extra hard if he has high oxygenation). So the nurses and I are constantly moving the mask closer and further away to get "just the right amount."

We'll see how tonight goes...


Ruthie said...

Amy you are truly amazing with all of this. I totally admire your determination and control in the situation. You are an amazing advocate for Max. All I can say is "you go girl".

Steph said...

Dear Dr. when do they officially present you with your M.D.???

Hang in're doing an
A-M-A-Z-I-N-G job!

XOXO to you and Max...


Drew said...

Shew! You've been busy.

I'm just repeating myself and what others have said, but you really are amazing. Keep on those docs. You're doing a great job. Max has one terrific Mommy.

I'll be thinking about you guys and hoping for the best as the little man goes through all those tests. I hope they are conclusive as to what's been going on with him.

Take care and good luck,