care conference

Today was our "big" meeting. A lot of the info we were aware of, but there was some additional information thrown onto the table as well. John and I have very mixed emotions about everything, but for now, we know what the next step will be.

It is very clear to us that there may come a point where we have moved from doing things FOR Malachi and doing things TO Malachi. Thankfully, we are not there yet. From the doctors' perspectives, their opinion is that even if Malachi survives to 5, 10, 15, 20, he will need complete assistance for activities of daily living and emphasized what a burden it would be on us as a family. Frankly, that side of things is bunk to John and I and we will do whatever it takes to properly care for Malachi--our convenience is NOT an issue. We understand that if all of Malachi's structural physical abnormalities can be corrected, there will most likely be severe mental and developmental delays. We cannot even come close to predicting what that will look like, so that worry is for another day.

From a cardiac standpoint, Malachi is doing well functionally. The plan for him is to undergo a heart catheterization sometime this summer and then heart reconstruction in October. This is MAJOR open heart surgery. In order for it to be "safe" enough for Malachi to go through that surgery, the thymus transplant and recovery MUST take place first. John and I are in agreement that in order to make an informed decision, we must meet with Dr. Markert at Duke. Her consult and opinion will greatly impact Malachi's future care. If she thinks that Malachi is not a suitable candidate for the transplant, we pretty much have no choice but to stop the pursuit of aggressive treatment.

But, if she thinks that Malachi would greatly benefit from this transplant, then we will be required to make a decision. Do we move forward with the transplant, or not? Obviously our first response is GO FOR IT! But there are other things to keep in mind. One thing that was brought up at the meeting today that we were not aware of is that with the complete DiGeorge diagnosis comes a greater risk for lymphoma (cancer). If lymphoma were to develop in Malachi's little body, he would not be able to fight it and he would not be able to handle chemo. Scary stuff. Also even with the transplant, there is no guarantee that it will DECREASE his risk for infection. These are risks that must be weighed with the benefits.

So, we head to Duke. We don't know how quickly this will all get thrown together. Dr. Markert is in a conference all week, so we won't get an official okay from her until Monday. Then we have to get all of the paperwork cleared through private and state insurance and travel arrangements need to be made. Then Riley ICU has to work with Duke ICU to get a room available and transfer orders in place and medical transportation must be arranged for Malachi to be flown to Duke. The delay is fine with me as we have planned to have my brother come visit next week and I'd like for that to still take place! Thankfully, they have a Ronald McDonald house close to the hospital and our Riley social worker has secured three roundtrip tickets for us to fly out for the consult. So at least we can be out there as a family. That's something.