Correction to email blast and an ongoing education

So I sent an email blast to just about everyone I know today. Mike & I felt we were really helpless in this situation so of course I latched on to the one thing I could focus on in order to feel I could do anything to help my baby. It was after a conversation with one of the doctor's @ UCLA, who is not on the main team for Ian currently, but was brought in to answer some questions for an alternative look at what might be wrong. Somehow in my foggy mind (over 3 weeks of IV Magnesium, C-section with pain killers & the stress of Ian's sickness), I understood from what he was saying that there were specialists in Pulmonary Hypertension in adults @ UCLA but not in infants. To be honest, this could have just been what my foggy mind heard and not exactly what he said. Turns out, after a couple of conversations with the very amazing, helpful and communicative Dr. Vladana Milisavljevic, who is currently in charge of our little Ian, that there are specialists there and she's one of them. as are both of the Dr. Devaskar's who are in charge of the NICU units for both SM & Westwood.

Another important piece I left out of the email is that what Ian has is Persistent Pulmonary Hypertension, which I guess for the people who know these cases, it goes without saying.

The other piece of the puzzle that I'm finally begining to understand is that in order to really be able to fix the Persistent Pulmonary Hypertension we need to understand the cause. They are treating the PPHS the best they can but until you understand where something comes from, you can't truly get to the crux of the problem. Thus they are treating him for various infections that could be bringing it on, and looking at the possibility of the one of original problems we found in utero, which was a possible Connective Tissue Disorder such as Marfan's or Loeys Dietz Syndrome, and how that might play into what he's dealing with now. These are among many other issues he is dealing with.

What has come of me sending the email blast out are conversations that are all pointing to the fact that  we do in fact have Ian at the right place with the right people looking after him. The first few conversations we had with other specialists in this area were all right on with what is currently being done to try to help his main problem.

What we're hoping will now come out of the blast is more conversations that Dr. Milisavljevic and her colleagues might have with other's in the medical community who might have seen a similar combination of issues to Ian's therefore helping point to some answers of where his problems are stemming from. He's got so many issues and, like I mentioned above, what exactly is causing the PPHN is the bigger problem that they are grappling with. 


I believe I understand now that more than transporting him, or flying someone in to look at him, what we need is possibly additional experienced ears to hear his case, with the combination of things he & I have been through, and to possibly put it all together and to possibly understand what could be causing his problems.


Dr. Milisavljevic let us know that she has also reached out to other colleagues across the country trying to find answers. This is a truly an amazing attitude to take. If you don't see a clear answer, seek additional input, which is what she also seems to be doing. 


What we also understand is that it's obvious that everyone has the same goal in mind, no matter how it is achieved, to help our little boy out of his current predicament.