'Episodes'

Hello Again,

An update for those of you checking in...

Grace's condition remains about the same. For every two steps forward there is one and seven-eighths back. She will do fine for many hours and then something - her blood pressure, or fluid levels, or pulse, or temperature, or poops, or blood gases, or any number of other things - will slowly begin to climb, or drop, out of the acceptable range and the staff will have to do something to right it. But whatever it is that is used to stabilize that imbalance will then cause another to be off... and then the next, and the next, right on down the line until she settles down.

So in the last 24 hours she has had a transfusion of blood and an increase in support on her ventilator. Her stools were sent out for labs and everyone (except mom and dad) have to robe and mask up when they enter her room until the results come back negative. This slows response time down a bit as the nurse, understandably, doesn't want to wear a mask and robe all the time.

Good news - her swelling is receeding and her color is coming back which means she's fighting the jaundice.

We had a meeting with the medical team Friday. They outlined the major steps Grace needs to take in the coming weeks:

First, she needs to have a permanent pacemaker put in. It is about the size of - well, how do I explain this - put your thumb and index finger together and make an oval; now seperate your thumb and index finger as if you where holding a good sized marble... the whole space between your two fingers, thats about the size of it. They have to find a way to fit this in little tiny Grace. This will be a major surgery, as they will go in from the left side, collapse her left lung, insert three pacing wires to both ventricles and her right atrium, place the pacemaker beneath her ribcage, and hope that her skin is elastic enough to close up.

After she is out of surgery she will be in a lot of pain, and may have any number of complications. They have already told us to expect a major setback; as humans, both adult and infant, don't like having foreign objects in their bodies. However the risk of infection from the external pacemaker is growing greater and greater with everyday... so in must the permanent pacemaker go.

They are looking to do this towards the end of next week (Wednesday, Thursday, Friday)... so, if you find yourself with a spare momment or two, send a prayer out for Grace. We will have about 24 hour notice and will post the actual time when we find out. She must have a solid day without an 'episode' or the surgery will be postponed.

Second, she will have to get off of the ventilator. The longer she is on it the harder it is to get off. It's kind of a double edged sword - it's allowing her to breathe easier and the rest of her organs are doing well because of it - but, she has not learned to use her chest or stomach muscles herself - and that means her lungs are not developing as they should... so that will be a huge hurdle.

Lastly, overcoming whatever complications and/or infection may arise from these proceedures, and getting all of her IV and other lines out. They have told us that for about a week after the pacemaker is put in she will not be doing well... but, after that she should start recovering and progressing. If everything goes well and she gets the pacemaker in successfully and the ventilator out successfully - she can move freely and exercise those muscles. No more medication to relax her muscles. We will be able to hold her!

In the end, the doctors told us to expect Grace to be here for about another three months. It could be shorter if everything went perfectly, but we are planning on the three months.

Thank you all for your continued support,
David