Tuesday, November 08, 2005

ANOTHER SURGERY

Yesterday I ran into one of the ENT doctors and asked if he could swing by and look at Max's nose...just to make certain that everything was still open and clear. It had been on my mind this weekend. Sure enough they came and took a look this morning and one nasal passage has narrowed/partially closed. I about lost it in rounds...cried, vented...the works. WHY is Max not getting a break? WHY did I have to be the one to remind ENT to look at Max? WHY, WHY, WHY???

So this afternoon ENT will perform a dilation (Max will be heavily sedated of course) at the bedside...this is not a fun procedure but better than having to go to the OR. However, the two times in the past that they have tried this, Max still had to go to the OR the next day...so I am expecting Max will have surgery on his nose again tomorrow.

The heart surgery will not happen until next week...they want to ensure there is absolutely no infection in Maxwell. We were hoping we could extabate him today or tomorrow, however now that will be delayed depending on his nose issue.

I met with the ICU attending today and made my concerns heard (me finding the eye gunk, me reminding ENT to come, me noticing his weight was doing odd things, etc.) He is such a wonderful doctor with a terrific bedside manner...and he is now going to serve as the "coordinator" of Max's care (they typically rotate every two weeks, but he will now check up on things even when he is not "on" as attending) to ensure there is consistency and routine involvement with all of the different specialties. The medical team here is truly incredible...I just want them to be PERFECT when it comes to Maxwell.

Today has been an extremely disappointing and emotional day...I am so sad and so frustrated. Thank you everyone for your thoughtful emails and calls. Very appreciated.

10 comments:

Ruthie said...

I am so sorry for all your frustrations. You and Max both deserve a break. I am very proud of the way you keep controlling the situation. You are truly an awesome example of a determined, smart, but yet very loving advocate for Max. Hang in there. This is just another ride on the roller coaster!

Anara said...

Through all of the heart ache, frustraton and saddness I hope you can feel all of the love surrounding you from everyone and that it will help you make it through this VERY difficult time. You are so amazing Amy, I know it is probably hard for you to think that right now but you are. I am sending all of my love and prayers to you and Max. I am glad to hear that Max will have the same doctor from now on, that will make it a bit easier on you too. I love you two...
Anara

Lindsey said...

Hello Amy,

I don't know if you remember me, I used to work at TOM's, but I just wanted to wish you and Maxwell the very best. I have been keeping up with your blogs and I ask the girls what they know every chance I get. My thoughts and hopes are with you and Maxwell during this difficult time. I'm rootin for you, as I know lots of others are too. Keep on truckin girl, you'll make it through.

Lots of love,
Lindsey

Lindsey said...

Hello Amy,

I don't know if you remember me, I used to work at TOM's, but I just wanted to wish you and Maxwell the very best. I have been keeping up with your blogs and I ask the girls what they know every chance I get. My thoughts and hopes are with you and Maxwell during this difficult time. I'm rootin for you, as I know lots of others are too. Keep on truckin girl, you'll make it through.

Lots of love,
Lindsey

Lindsey said...

hm.. i seem to have posted twice. interesting.

tessa said...

Amy
i have been thinking about you and max all day long...sorry it has been such a hard day. all i can say is ....i love you both!

Drew said...

Amy,

I'm sorry to hear about all your frustrations and difficulties. I hope Max gets breaks from here on out. You guys are always in may and Steph's thoughts. Hang in there.

Drew

lisa salisbury said...

You and max our in our thoughts and prayers!

lisa salisbury said...
This comment has been removed by a blog administrator.
Meredith said...

Hi, Amy:

So sorry to hear about all the hurdles Max has faced lately. I believe that a mother truly knows best. No one will ever understand and love Maxwell like you do; you are there to guide him and the doctors through this. Today and everday, there are many prayers and much love being sent to you from us.

Meredith, David, and Davey