Friday, November 04, 2005


The doctors decided not to extabate Maxwell this week so that he can rest up for his surgery. With the help of morphine and adavan, he is comfortable and not fighting the ventilator. It was a tough choice...I wanted him to be extabated for his own comfort (and for mine) but we didn't want to risk anything going wrong (i.e. a Max "episode") and have to delay his surgery.

He is gaining weight, but unfortunately he has also been retaining a lot of fluids too. His face the other day was so swollen he could barely open one of his eyes. The predicament is that he can not be retaining fluids before surgery (because they will be pumping him up with additional fluids during surgery)...but the lasix (which is the best diuretic) can add to the calcification of his kidneys. We had stopped using that drug a month ago when they found the kidneys were really taking a hit from it. So right now we are using small doses just to help Max eliminate better.

The surgery is still planned for Tuesday. I met with the cardiac surgeon yesterday and he reviewed the surgery in detail, as well as any possible risks and complications.

He will go in at 7 a.m. and the surgery will probably begin around 9 a.m. There are approximately 2 hours of "set up" with the anesthesia team, as well as getting Max set up on his lung and heart bypass machine. Basically they stop the heart with the help of medicines and must drain the blood from the organ. Meanwhile they connect his body to the bypass machine which will move the blood and oxygen throughout.

As far as the risks, he was a little more optimistic about the outcome than I have been told by my cardiologists which was good to hear. The weeks following the surgery will be very important because that is when complications (if any) would arise. I feel very confident that everything is going to go very smoothly.

I am worried right now about Max staying healthy for Tuesday. I had to head home last night because I caught a bug (fever, sore throat, etc.)...and obviously it's not a good place for a sick person to be with the cardiac ICU patients. As soon as I started feeling bad, I wore a mask but I was still worried about spreading germs so I finally decided to leave. It was really horrible to leave Mr. Max...but today I feel even worse, so it's a good thing I left when I did. The nurses have promised to give him lots of extra TLC in my absence.

Tuesday, November 01, 2005


The cardiology team met this morning, and Max is now scheduled to have his open heart surgery on Tuesday, November 8th. His heart defect may be more complicated than originally diagnosed. The month after surgery will be very, very important for Max's health and recovery. Most problems arise during that time period.

I am obviously very emotional and nervous about this upcoming surgery, however, I know it is something Max needs and we must move forward.

Since his surgery is a week away, we are hoping that he can get extabated for a few days. First they must wean him off the heavy sedation. He has been looking around and much more alert the past 24 hours, which is reassuring. Hopefully I will be able to hold him in the next few's been a week since I have been able to snuggle with my lil' guy.

Please keep my sweet Maxwell in your prayers. As his poster (yes he has a million posters around his room declaring how wonderful he is - the staff gets quite a kick out of them) on his ICU door says, "Please get me better very soon...I have much to accomplish in this world." How true that is...and how much he has already accomplished in his brief four months.

Sunday, October 30, 2005


This year Max has decided to celebrate Halloween as "Robot Boy." It's quite a confusing (and quite depressing for Mom) costume and it requires a one on one nurse and a lot of sedation to maintain the "appearance." We hope your costumes are slightly less intense and allow more movement! :)

Max did wear his "My Little Pumpkin" hat yesterday (which everyone loved!!!) but I didn't have my camera with me! He couldn't wear the rest of the outfit because of all of his IVs and attachments. A volunteer made a super fun Halloween quilt for his crib too. (The volunteers here are so wonderful!)