Update on the Conference

Ok, so I have pestered the doctors for several days now for some kind of documentation on their official opinion on Joshua’s heart defect and I still haven’t gotten anything.  I don’t know if this non-committal approach is common these days among doctors but this runaround they are giving me is pretty frustrating.  The Cardiologists finally got together with one of the attending Neonatologists as well as the Pediatric Surgeon and talked yesterday for about 1 hour about Joshua.  They wouldn’t let me sit in on the conference because of HIPAA since they discuss other patients but I wasn’t going to fight that (pick and choose your battles I suppose).  The Neonatologist came and spoke with us after the meeting and told us that in their opinion, there is no reasonable chance of survival given the last echocardiogram that was done on thursday of last week.  Also, the Cardiologist that is on this week has understood my position about wanting second opinions and documentation and he is starting to make things happen for us.  He also came to us last night and said he would try and talk with Cincinnati as well to get their opinion and give me something in writing.  I heard this morning that Cincinnati would be happy to do this and have requested that the Cardiologist perform an echocardiogram today and to send them Joshua’s documentation.  They will then formulate an opinion and write us a letter to that effect.  This is what I wanted in the first place and I can’t believe that it has taken me so long.  I have asked so many doctors so many times before this point for this exact thing.  I don’t think they are taking me very seriously or something because when I ask for some kind of documentation, the doctors sometimes give me very quizzical looks like, “What do you want that for?”  I tell them every time it is something I need in order to make the decision to let Joshua go so that if (when) I start to question myself, I will have this to fall back on. I think part of the hesitation is that they are not used to being questioned.  But this is my son so why wouldn’t I do everything I can for him?  Not everyone can be right given that we all make mistakes and I need someone to double check their thinking.  Hopefully we will hear something soon from Cincinnati officially (instead of a handwritten note that just states the doctor’s name and says he agrees with the prognosis).  We aren’t expecting to hear any different from Cincinnati but you never know.

By the way, Joshua pooped yesterday!  It took him 11 days to do but he performed!  Daddy was proud!  I wonder what this means regarding his bowels but I know something must work or at least did for a while.  I was going to talk with the neonatologists today about that.  Last night they had to turn the vent settings up slightly because he had high levels of CO2 in his blood gases.  They turned the delta P (pressure) up from 18 to 19 and he seems to be doing better.  Ph was also low but that is to be expected with high levels of CO2.  We have been continuing to hold the little guy as much as we can.  It is a major ordeal to hold him because of all the tubes and wires but it is totally worth it!  The other night I held him until 3:30 am!

So, this whole thing has been one roller coaster after the next.  It is just frustrating for me to be fighting with doctors for an actual official opinion but I guess in times where no one wants to take responsibility and step up to the plate I shouldn’t really be surprised.  On one hand, the doctors say that they will do anything we ask given Joshua’s condition (including taking Joshua to the children’s playground on the 6th floor so that he can be outside).  But when I ask them for documentation, which I know they have to have, they are giving me grief and a major runaround.  I will continue to ask until they provide it for me as well.  They don’t realize that I am hard-headed and very stubborn just like Joshua has been.  Joshua is pretty stable given his major issues and has now been with us for 12 days.  God is good in letting us spend time with him and to bless us with this gift that no one can take away.  Even if all the Cardiologists and Neonatologists say the same thing, which is what we expect, we love our boy and will love him to our graves.

Thank you for all your prayers up until this point and I ask for continued prayer.  Pray for our strength, for healing of Joshua and prayer for all of us to have peace in this situation, no matter what the outcome in the end.  I am going to fight for Joshua until everyone has given me official word that there is nothing they can do.  Thank you…