August09 294 (2) 

This pic was when she was still in the hospital.

Sorry it's taken me so long to post.  I've been a little busy.  After much discussion, Maggie was discharged from the hospital on Friday afternoon.  Maggie's oxygen saturations were not where the doctors wanted them so it took them a little to decide that it was okay to go home.  Most post-fontann kids have oxygen saturations in the mid 90's and Maggie's were hanging out in the upper 80's.  However, her chest x-ray was perfectly clear and her echocardiogram showed that her heart function was very good.  So, Dr. Sharkey and Dr. Gandhi decided that she could go home and we would see Dr. Sharkey today. 

So, why the low oxygen sats?  They don't really know yet.  There is something called AVM's and they are collateral vessels in the lungs that would cause some of the blood to bypass the oxygenation process.  This is a definite possibility.  There are a couple of tests for this and the most accurate one is a bubble test that they would do through an IV.  If she indeed has them, they can do another cardiac cath and coil these vessels.  It is also possible that they could go away now that she has the fontann.  We will find out more about this today. 

How is she doing now that we are home?  Well, Friday was a really rough day… mostly on me.  I spent the entire evening worried sick about her and watching her like a hawk for any of the symptoms they told us to look for.  Ryan slept in her room with her that night and she woke up about every 4 hours.  Saturday was a much better day.  She did throw up that morning, but after calling Dr. Gandhi I felt much better.  As the day progressed, she continued to gain more energy and be less crabby.  She is throwing lots of fits as we're not waiting on her hand and foot like we were in the hospital.  It is difficult to know which battles to pick.  She ate like a pig saturday night and woke up sunday morning feeling even better.  Yesterday, she went to the arboretum with her daddy while Trent and I were at church (she was not happy that she did not get to go to church!).  Her energy level was even better yesterday and she walked around the yard without huffing and puffing for the first time in months.  She is only taking tylenol as needed now and hasn't had any since 8:00 last night! 

Oh, and my perfectly potty trained 2 yr. old is back in pull ups.  She is on two different types of diuretics right now so she has a really hard time controlling when she goes potty.  Plus, she wore diapers the whole time she was in the hospital.  So, we're back to taking her potty every 1/2 hour.  She did ask to wear panties today so that's a good sign.  I can't push it too much until she's off of these lasiks.

I am having a hard time with the low sats.  It's once again not what I had planned and not what I expected.  As I told Ryan on Friday when I was pretty upset, "I didn't put her through all of that to have sats only a little higher than before surgery."  However, I am not in control.  As I was reminded in Sunday School yesterday morning, God gives us what is best.  His best may not be what we think is best, but it is the best.  I continue to stand in awe of God's power.  Thank you Lord for the last week.  Thank you for doing what is best for Maggie Jane.

Here's the pics.  There are captions underneath each picture:  Fontann Surgery