Saturday, April 2, 2011
Bubba Love's annual heart checkup on Wednesday and it was a very mentally, physically and heart breaking day.
I am a huge believer that you must follow your instincts in life and trust that God will guide down the correct path. I never felt comfortable with the first cardiac facility we were out so I asked our pediatrician if we could transfer to Mott's Cardiology department and Uof M. We had Madison's surgery there and loved it. They are amazing in every aspect possible. You can tell that "little people" are all they deal with. I was very randomly given one of the highest ranked Drs in the department. Unfortunately due to work Mike couldn't go with me and thanks to my dear friend Beth who kept Madison all day for me it was just me and my little man.
The day was a whirlwind: Up by 6, in the car by 7, at the facility by 8 and in the EKG lab by 8:15. Bubba Love as you can imagine was not thrilled by any of it. I could not believe that even got a successful EKG of him. The NP and Dr spent almost an hour with me talking to me examining him and answering my thousands of questions. Normally they would do and echocardiagram of new patients but Bubba Love was never going to lay still for it and I had given him milk that morning so they could not give him anything to relax him. The Dr was going to send us home without one and just do one at his next "yearly" visit. He said that based on all the information that he had and what he could hear that he had a very general VSD (heart murmur) it was not serious and within a few years we would no longer need to even monitor it. Great news, right? I get that some parents would have been like ok if the Dr says its ok and what is best then I will trust him and not put my child through anything else. Well anyone who truly knows me knows that I am not one of "those" parents. I said NO I feel like it is best if YOU echo him so that you can see his heart for yourself. That was always the plan to do one and I "feel" like it needs to be done. I will not feel comfortable unless you do it. Crazy, insane, stubborn, pig headed, and many more names is I am sure what he was thinking about me and I was ok with that. Luckily they could fit us in in 2 hours as long as I did not give him anything to eat or drink before we came back. Fine no problem. So then Bubba Love and I began our walk around the massive facility, finding places to play, watch a little movie and then more playing. Well 3 hours later they finally call us back to give him the medicine to relax him. Once the nurse finally came in she accidentally knocked over his medicine and had to go back for more. The echo went well he was such a trooper.
My first moment of concern: the nurse made a strange concerning sound while doing the echo.
My second moment of concern: nurse says "I am going to let the Dr. look at these to ensure that I have everything she needs (Bubba's Dr is a man).
My third moment of concern: The head of radiology (Dr. Amy) comes in and spends 15 more minutes taking images of his heart.
My fourth moment of concern: major wait between echo and Dr Adam coming in to see me.
My fifth moment of concern: the look on Dr. Adam's face when he walks in the room.
It all explodes in my face:
He begins by saying, "MeLeah I am so sorry I have no clue how this happened, but the original Dr. (at the first clinic) mis diagnosed your son. He does not have a general VSD, he has a much more serious sub-pulmonary VSD that puts his aortic valve at risk.
I don't know how to describe the feelings that I experienced in those moments: Anger ( I am going to harm his first Dr. rash I know but valid???), Sadness, Shock, Thankfulness that I had trusted my heart and God that he needed the new echo and many more feelings.
What a long 30 minutes it was hearing him explain the "new" VSD to me and answering all my questions, explaining all the risks and possible complications and the possible surgery that he would have to have if one particular complication were to arise.
SURGERY!!!!!!!!!! Wow, 4 hours ago he said "he will never need surgery for this vsd" now we are talking about surgery on my baby boy.
I felt like someone had ran over me with a truck at the beginning of this talk then he just backed up and ran over me again. My poor baby boy how do you ever treat him the same, look at him the same. More importantly how do you trust the medical system, how do you trust one physician over another, how do I trust that they finally have the diagnosis correct.
We go back in 5 months to have all the testing done again. We will go to echo first then to EKG then the Dr.. They will look to see if the VSD is closing at all because this would not be good. My understanding is that the valves (pulmonary and aortic) have 3 sub-valves within them and the membrane that separates these valves actually start to fill in the hole causing a breakdown of the inner valves which is a major problem. If this were to begin to occur we would have to do surgery to correct it. I do not truly understand what the Dr. is talking about but I did my best to follow him and understand the diagram that he sketched for me.
In the end Bubba Love needs your prayers more than anything else in the world. My tears and time spent worrying are wasteful. He needs prayers. I thank God that he gave me the wisdom and stubbornness to insist that the echo be done. I could have left that facility not knowing what was truly wrong with my son and who knows where we will be a year from now. You know us!!!
Thanks for listening and thanks in advance for all of your love, concern and prayers.