Thursday, March 2nd

Will is not doing very well. He needs your prayers.

Well, we just had a sit down with an attending cardiologist and a cardiac surgical fellow. Here's what's going on:

1. Will's chest is full of fluid that hasn't been able to drain. I'm not too clear on what's going on with this fluid, but from what I understand his blood is having problems clotting the way it should and the fluid is starting to collect in pockets within his chest cavity. It is starting to create scar tissue in his chest wall. This has caused Will to have some problems with his lungs because they cannot ventilate properly.

2. Will is still having problems maintaining his blood pressure. He is now on a high dose of dopamine. If things keep going this way, he will be back on epinephrine.

3. All of this fluid has created problems with his incision trying to heal. As I mentioned before, fluid is constantly leaking from the top part of his incision, which is near his trach. In fact, the incision opened back up last night. The surgical fellow had to put a couple more stitches to close it back up. Now it appears that an intervention of some sort is needed to close his skin completely. We have 3 options (all of which have their risks and benefits):

a) Insert a sponge and a vaccum device: this is normally used for superficial wounds, and there are no studies on how this would do in a chest cavity in which the sternum is open. It is risky because it cause injury to the heart with it being so close to the incision... it could rupture a vessel. This can also take several weeks for it to work. It can also be highly beneficial if it works. It could help get rid of all of this extra fluid in Will's chest.

b) Cover the wound with a plastic sheild: this is what they normally do when a baby's chest is left open after surgery. This would essentially put us in a "stall mode," and it really has no benefit as far as we can see. The only risk is infection.

c) Have a skin graft taken from another part of Will's body: this procedure would involve plastic surgeons. Finding skin & tissue on Will's body will be very difficult, given that he has been hospitalized for almost 5 months and several parts of his body are swollen with stiff skin and tissues. This is also no small undertaking. Will would have to go to the OR for a lengthy procedure. And since the graft is so close to the trach site, it could create problems with his skin and tissue being able to support his trach. It looks like at this point, this will be Will's best option. The plastics team has already done a consult and taken pictures of Will. We should hear back from the attending soon.

Since Will is getting sick again, this has prompted a discussion with Will's doctors on whether or not Josh & I want "heroic measures" taken in the event he goes into cardiac arrest. This is something no parent should have to decide. At this point, we have decided that we do not want them to perform CPR or shock his heart. They will give him medicines and give him more support through his ventilator if needed. We may change our minds, but for now we feel that Will has been through enough. With all of his other problems, CPR would most likely add more insult to injury. We pray that we will never have to do this. We pray that whatever God wills to be done, will be done.