Where we are now

I have lots of praises and requests today! We had our appointment today, it all went smoothly and I wanted to let you know where things stand. Jeff went with us and we had a very informative consultation with the doctor. He was very kind and appeared to have really studied Matt's case and he showed us the MRI images so we could see what was going on. We asked a lot of questions and he patiently answered them. Jeff and I both thought about how hard it would be to be a pediatric specialist dealing with life-threatening conditions in children, with very worried parents. Poor guy, can you imagine putting up with two anxious parents throwing questions at you right and left, who are both doctors:)!

Matthew has an area in his aorta that is too narrow, it is a little longer that we realized until the MRI and may be "kinked" more than is evident on a 2D image. Then the aorta kind of balloons out from the increased pressure (but there is not an aneurysm). The goal is to get the aorta to be the same diameter throughout this area so there is not any pressure gradient. He will have to have a cardiac cath under general anesthesia and with intubation and they will take size and pressure measurements with the catheter and then come out and talk to us about options. The pressure may be lower than it appears and nothing will need to be done (based on results so far, this is not likely). They may be able to dilate the area with a balloon (this is also less likely of a scenario because they probably cannot stretch it big enough without taking risks of rupture, which could prove fatal). They may be able to put a stent in to stretch and hold it open. Likely a stent that would fit at his size today will not sustain him through his full growth, but may have to be revised in a few years. And the other option is that because of coiling of the vessel and/or size of stent needed, that there is too much risk of aortic rupture to go through the catheter site and he would need open heart surgery. They will tell us that at the time of the cath, wake him up, and schedule that at a later time.

The plan is to do this Friday, February 20. It is only a few weeks away but this will allow him to finish his basketball season. It is getting him in better shape and he has lost 5 lbs (a good thing) in the last month and they are encouraged by that. He has worked really hard and it has made him feel more like a "normal kid" so that he has handled this challenge very well psychologically. His coaches watch him like a hawk and never push him, but give him the encouragement and opportunity to participate and it has been so good for him, I will be eternally grateful. This development has been caught early and the doctor said even a couple of months would be fine and he is not even sure he could get him on the schedule much sooner than that. We certainly would move forward as quickly as was felt needed, but this is something that is more to protect him long-term than of an urgent nature (like his initial surgery!)

My sweet boy was a model patient, wanted to go to school as soon as we got back in town, and does not even want to dwell on all this, just wants to do his thing day by day. I am home for a couple of hours before going back to get everyone and we have games tonight. I wanted to update asap.

I am sending praises up for having such a tremendous husband and father for my boys, he takes wonderful care of us in every way, for caring medical providers with the skills to take care of us,
for the progression of medical science to where a little boy like Matt can survive and thrive, for all the support and concerns and prayers that have been offered up for us. And I praise Him, for through Him, all these things are possible.

Love, Laura