I spoke to Dr. Brenner this afternoon it was really nothing earth shattering but it very nice to be informed. The first thing he told me was it is justified and totally fine for me to worry and be a bit nutty about Tatum.
The approach going forward is going to be different then the past approach. Dr. Brenner and his Colleagues feel that the risk of being passive is much safer then the intervention, especially when the intervention has had no accomplishments. They are going to see Tatum every three months at Hopkins, her HD is way to severe to be seen in a field office. They want to be able to take there time and have other see her if need be. We are going through with the eye surgery in Feb and Dr. Brenner is wants me to page him from our pre op meeting on the 7. He actually gave me all sorts of numbers to get a hold of him night or day.
Tatum has a right Coronary dominate system. This is common, what is uncommon it the right coronary is very large and the left is very small. The right one has a degree of obstruction were it branches off from the aorta at the beginning of coronary artery. Her aorta is what it is, very small but she has good pulses in her feet so…. Her pulmonary arteries are a “nightmare” or “pretty awful those were the Dr.’s terms…. Always nice to hear…Her LPA is diffusely small with additional branch stenoses all over the place. He compared them to a Exit off 95…If there were piles of trash in the road when you got off to exit you would have to squeeze by them…That is what her blood flow is doing…sometimes when the flow is not good they actually collapse. The RPA is a little better then the left. Tatum’s blood pressure is also higher then normal with put her at risk every day for a stroke but so far so good so we are not going to worry about it. She is not able to take meds for the pressure because it needs to be higher to maintain the perfusion of the coronary arteries.
We are not doing anymore Caths for the moment the Doctor feels that cathing her puts her at a very high risk for a Arrhythmia and the past Cath’s were really hard on her groin or whatever it is that they go in through so we need to preserve them for the time being.
On the plus side he did say that it would be safer if she were not in Daycare.
At this point I do not know if I should cry or just be numb to the situation, there is nothing that I can do to fix her all I can do is enjoy her.
Hopefully these pictures can help you too see a bit better what is going on in little T. The Aorta stenosis is hard to see because the decending part is behinde the picture.