Monday, May 22, 2006


What a night already...and it's only 3 am! We just returned from the E.R. and now I am staying up to watch his heart rate and oxygen level, because they are both all over the board.

Earlier today (around 6 p.m.), Max fell asleep in his swing and begin experiencing bradycardia (low heart rate) and continued that for hours. He dropped down even lower than his usual low, and that certainly caught my attention. His monitor was literally going off for a straight two hours with his heart rate sitting in the 50s. He drops to the 50s sometimes, but this time he actually was sitting on the lower end. I don't like seeing 50/51 for his heart rate. Finally I decided to call our doctor but because it was after hours, I talked to the on call nurse at Children's. After explaining Max's medical history (that's always quite simple - ha ha), I was referred to the on call cardiologist. Unfortunately this is the one cardiologist at Children's that does not know Maxwell. So I explained all of Max's issues relevant to the heart and everything that has happened post surgery (again quite a lengthy list of issues and procedures). She says to head to the ER just to make sure nothing has changed and that this ongoing cold/virus isn't impacting his heart.

I ask that the doctor call ahead so that we don't have to wait in the waiting room (too many germs!!!) and fortunately we were seen immediately. They hooked Max up to an EKG (the 12 leads on his chest) and monitored his rhythm. Everything appeared normal there. But they wanted to see what he is doing when he sleeps, so they put us in a private room and I was to encourage Maxwell to fall asleep. So we snuggled up on the bed together and I think Max was quite confused. He was looking at me, looking all around the room, playing with my hair...anything besides sleeping. Finally my lil' guy decided to doze off but it wasn't "heavy" sleep and he only "brady'd" a few times. After a few hours of this, I asked for us to go home and they agreed. However, as soon as I put him in his crib at home (literally - it happened immediately!!!) he started to brady like crazy and was sitting in the low 50s. Bugger!

I am supposed to talk with the cardiologist tomorrow morning and they are hoping they will have the halter results back from last week. The concern is if there is a blockage that is causing these low drops...or is this "just Maxwell" and all is well for now. Most likely this will be an issue we always will have to watch closely. He simply does not have a normal, healthy heart and it will probably never function as such.

Anyway, as I write this post, his alarm has started to slow down, so I think it is time for me to try and get some sleep...HOPEFULLY! I am so glad I had help here last was sooo wonderful! Getting eight hours of sleep was a complete dream and allowed me to stay focused on Max's issues tonight. Good night!

*Thanks Eliz for joining us at the hospital...definitely made for a more enjoyable visit to have your company! :)


Lisa W. said...

Amy, I'm sorry to see another post by you in the middle of the night. You must be so exhausted girl. Kennedy would have bradycardic episodes after her first open heart surgery too (remembering back 8 yrs now) - and 50-60 was not abnormal for her but I don't remember her staying down there for extended periods. Hopefully, it'll just be a "Maxism" and nothing will need to be done but monitoring.

Anonymous said...

So Maxwell needed somemore attention. I hope you get the results that you want from the Cardiologist. So glad you were finally able to get some sleep.

Moriah (zandysmom) said...

Wow Amy, you really are super mom!!! What a horrible time you guys are having right now, seems like one thing after another. I hope that the cardiologist can figure out this little quirk going on. I remember that Alex got to a point where his heart started to go slower but the figured out that it was just him maturing (babies grow out of those fast heart rates) but I do not think it was ever in the 50's, but sleeping he would be in the high 60s-70s. I think it was right around a year too because we stopped using the apnea monbitor because h would set it off all the time. (((HUGS)))

Steph said...

Hey Amy,

My heart sank reading these last couple posts. I hope and pray that Max is ok and that you both can get some much needed rest.

Why can't these stupid insurance companies understand that you need to get sleep and take care of yourself in order to take care of Maxwell? I don't get it!!!!

And if you have to pay -- by yourself with no help from what's his name -- to have a nurse come in to help out, that will be such an outrage.

Drew and I are thinking of campaigning for Vic Sprouse's opponent. At a minimum we'll donate to his/her campaign.

Love you,

Drew said...

Hi Amy,

I'm sorry to hear about this scare. I hope they are able to figure out what's going on with Mr. Maxwell. I also hope you are able to get some sleep.


michelle f said...

You and Max are in my thoughts and prayers. I will also keep praying that the insurance companies and Vic get some sense.

Stephanie and Drew - I am from Charleston, WV and I will help in any way to campaign against Vic Sprouse!!! Just contact me when you get started.

elle said...

wow he like to keep u on ur toes LOL

elle said...