Tuesday, September 20, 2005


I woke up bright and early Monday morning...after a long night with Max (off and on fussy andd needing suctioning)...to the ENT doctor shaking me. One of those situations where you think you are dreaming that someone is shaking you, but it is actually happening. Funny way to wake up! You truly have no privacy in the hospital! :)

The removal went well and the passages are open and clear. He is now able to use the nasal canula instead of the blowby mask. It was very strange to get used to not having to watch the mask all the time...I am so used to making sure his face is in the direction of the mask and now he has so much more freedom. Also, it was wonderful to turn off the mask because of the sound! You didn't realize how loud it was until it was gone. With Max's partial hearing loss, that probably wasn't helping him much understand the world around him.

I also can hold him in many more positions (including my favorite, kangaroo care) again. With his stents and mask, the options were pretty limited which was frustrating.

We had a great morning together and it was wonderful to be able to move around so much more freely. HOWEVER, the afternoon and evening was miserable for Mr. Max and therefore his mommy. He cried and cried and cried...it was like last week all over again. Not sure what is going on...and finally we did have to calm him down with Adavan. He simply wouldn't calm down and that is not good for his heart...and for growing. It really worries me that something medically is bothering him...but I am hoping he just was agitated with the stent removal. We'll see how today goes.

His weight is not doing as well as it was. He grew in length last week but gained virtually nothing...and yesterday he actually lost weight. I met with Max's dietician and we are going to keep a close eye on this, but she is not overly worried at this point.

We have several specialists coming by to check on him today to prepare for tomorrow's care conference. I have quite a LIST of questions...so I am quite eager to get together with everyone and plan for little Maxwell.

If you are praying for Max, please pray specificially for the HEALING OF HIS NOSE. Please ask God to eliminate any complications or future issues and to enable Max to have easy and clear breathing from this point on. I cannot tell you how important the solution of the nose problem is to Max's health...please keep him in your thoughts and please pray for this healing. Thank you very, very much!!!


tessa said...

Amy this is all so exciting to hear that you and maxwell have so much more freedom with his new little nose without the stents in! i will keep praying for maxwell, and you too! you are an amazing woman amy...stay strong.
much love

rebecca said...

More good news, what a great way to start the week off. Keep getting strong Max. I will keep you and your moomy in my prayers.

On another note, so sorry to hear about the passing of Conner. My heart goes out to his family. I will also pray for them in this time of need. Life is so fragile, I have to remember to cherish everyone in my life because it all can change tomorrow.


Anara said...

I'm so glad you can hold Max more comfortably. Big time prayers for Max's nose!!!! Good luck tomorrow with the doctor's....go get em! give Max a hug and kiss for me.
Love you, Anara

Sandy said...

I just found out about Max less than two weeks ago. I went into Curves and was really excited to see what Amy had. I had been out of touch for sometime. I saw pictures of that beautiful little boy. I have been checking updates daily. Some people are hooked on Phonics I am Hooked On MAX. GOOD luck and I will keep checking on you and your precious little guy.