What a VERY LONG DAY! There has been a lot going on the past two days. Yesterday was not a horrible day but was full of lots stuff. We said good bye to Michael's developmental teacher. She was also Joshua's so it was hard to see her leave for the last time. I got Michael's evaluation paperwork from school. He will certainly qualify since he fell in the 5% in two areas. I went to bible study and it was a good break from the chaos of the day. When I got home, I was in bed and Richard came to me to tell me he needed to have a costume for the next day's Civil War Ball! We ran to Sears and I spent money I didn't plan to but we got it and I was up sewing his vest.
Earlier in the AM I called the Medical Examiner to see if they had finished his autopsy. They told me it had been done for a week!!! No one could call me? Ugh...I know it isn't their policy but come on! Oh well, I had to fax a letter then it had to go to their legal department and then they were going to mail me out a HIPPA form and then I would have to mail it back and then wait for the paperwork. I was so overwhelmed having to wait but asked if I could go and pick it up. They called me right before they closed to let me know I could come in today to fill out the form and pick it up. I was so thankful.
Hugh said he did not want to go or know anything other then what his cause of death was. I was prepared to go by myself. My mom had asked to go but she was just to close to the situation and I didn't want that since I knew what the report would entail. I was prepared to just go myself until after a conversation with a woman from our church. She had been a social work from DYFS and she convinced me that I needed a third party person to go. She offered to go with me and I was reluctant to say yes but I was not sure how I would handle it if it was not SIDS. I knew that she cared but was not so emotionally involved that I was ok with her going because she had read many autopsy reports and would know what to expect.
I got up early this morning to help Richard get dressed for his ball since he had to come already dressed. Then I got myself together and the anxiety mounted as the time neared that Marsha was suppose to pick me up. As soon as I saw her care I was out the door and we were headed to the medical examiner's office. I filled out the paperwork and almost had to wait until Monday due to someone in the legal department taking the day off. Thankfully they had compassion and gave me the report. I didn't bother to read anything but the finalized death certificate wich listed his death as "sudden unexplained infant death" It meant they had no answers. I flipped through the report not reading everything but just scanned it.
Marsha took me to get coffee and we went through it a little more but she read it more then I did at that point. I just wanted to know initially if they found anything. Hugh was waiting so I called him and told him it was what I had suspected would be listed. There were some things I had come across in my initial preusal that I knew I would have to look up so I didn't want to go further into it without a way to look it all up. We finished breakfast and headed home where she dropped me off.
Ironically, I talked to the gentleman at the medical examiners office and told him about the upcoming in service that I am working on at the hospital. He asked me to let him know because he was very interested in attending if possible. I had peaked his interest when we had spoken during my interview with him over the phone reguarding George's birth and life. I was talking to the receptionist when he heard my voice and conversation and realized it was me and said it was nice to put a face to a name and that he was sorry it was under those circumstances. That was when I told him that it was ok and what I was doing with the hospital. That was when he asked me to please tell him because they were very interested there to learn about Mito.
When I got home, I went to my mom's and grabbed the video camera so Hugh and I could go to the ball to see Richard dance. He was wonderful and it was nice to have the break from the emotions that just seemed so overwhelming at the time. I was very proud of him and even got a chance to dance with him. He was much better then I was but it was a lot of fun. We got home and picked the boys up from my mom's. I stayed a little while I waited for Richard and Hugh went to go help with the church hoagie sale prep work for tomorrow. I went home eventually with the kids and began my prep work for Michael's birthday party tomorrow.
We all had a rough emotional afternoon/evening, especially Richard. It was nice to be here all together to be here as we each hurt in our own way. I don't know if having the information was better or worse. Hugh said tonight that he knows the pain won't get better but it can't get worse so that is a possitive thing...I guess?! Just a little while ago I sat down and read through the report from beginning to end. What a horrible thing for any parent to ever have to read. I'm not going to go into details but anyone in the medical field knows what they entail and they are very graphic. I hate the fact that they did that stuff to my baby to just come up with nothing...just like I said it would be! I know there are horrible people out there who do horrible things to their kids that make it such a nightmare for those of us who don't do those things.
Several things jumped out at me and I did have to look up some of the stuff. He happened to have an ear infection...we didn't even know that. It explained the funny thing he was doing that night with his one hand, it was the same side. He showed no signs of an infection and had just gotten over a cold and had been to the doc a few days before. The one thing that kept ringing in my head and was printed throughout the report was that he was a "robust well nourished and apparently well cared for male infant" I cannot tell you the solice I find in that. There is no way to explain why that has meant so much to me but it does...it was obvious to them that he was loved and taken care of and that was so important to me.
The other thing that really meant a lot to me was when I was reading the report. It gave you details of that day. They also noted that someone at the hospital had dressed him! I cannot tell you how much that meant to me. When I left him at the hospital he had a bunch of tubes and Iv's(all of which were noted in the report) in a diaper wrapped in a blanket. We had taken his pajamas home with us. Someone cared enough to dress my little boy for me and I cannot tell you what that means to me to know that he meant so much to others. Even now as I write this I have tears streaming down my face with the very thought of that.
They did run one metaboic test, an acylcarnatine profile. It was ran by the Mayo clinic and came back negative. The funny thing is that none of my boys had an issue in that profile ever! I was not surprised at all other then this is the only test for metabolic issues that they use. Ironically, there was an issue with his liver, lungs, and gastroesaphegeal junction that were enough for them to note in the histiology section. The liver thing is related to a fatty liver issue! It was sparse in it's presence throughout the sampel they had but it was there and has relation to metabolic stuff. Usually it is connected to Reyes Syndrome. They attribute that to use of aspirin but George NEVER had any of that, none of my kids have but it also found in people who have never used it either.
Some of his cultures came back possitive for staff, strep, and HIB. These were found in his spinal fluid, ear, lungs, and blood cultures. There were different strands of them. I'm not 100% sure I am reading that part of it all correctly but I will be getting some help from the SIDS foundation to read it all. I also want to have Ken look at it and see what he thinks of it. At this point I don't know what all the abnormalities add up to but they are things I need to look into and question. I just don't know enough in this area but as always I will find out and educate myself where this is concerned. I just pray to God I never need to know it again. Nothing was significant enough for them to feel he died from it but I still feel the need to look into it a little more until I understand it all.
I feel like I have been hit by a truck right now and am exhausted from the emotions of the day. Tomorrow is Michael's birthday party. We still opted to have it dispite how hard it is going to be. Many times I feel as if I am walking around stuck in this world that does not move yet the world around me keeps spinning. It is such an odd feeling sometimes. Please keep us all in your prayers as we come to terms with these things and try to keep moving forward one small step at a time. I miss my little monkey more then anything in the world right now. We are all having a hard time right now and although it seems like we are fine on the outside most of the time, we are dying inside or just literally going through the motions and barely keeping it together a good portion of the time. 8 weeks have gone by and it is no easier then it was the day he died nor do I ever feel it will be until we are reunited again someday in God's kingdom.
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