Thursday, June 28, 2007

More questions than answers

Well, we now know Annie has a spleen and that it appears to be functioning (see previous post), but we are still waiting the results of two blood tests...we aren't really worried, but it has been two weeks so it would be nice to know.


I have been really struggling the past few days, frustrated by the lack of information about a) Sophie's condition and b) what happened in the ER that night. I finally took the step of going to the library and pulling all the journal articles that we keep seeing on Pub Med. One of the references was to a text book Human Malformations and Related Anomalies which had a chart showing that Asplenia and hemivertabrae are linked. That was a gut punch for both of us, and we want to get in front of the orthopedic doctor she saw to make sure he knows that. If it could prompt him to recommend an ultrasound for even one child with hemivertabrae and it saves them it would be worth everything. Another article that I have been curious about is one that suggests that when a child has recurring sepsis infections a doctor should check for asplenia. My question still is what would prompt them to check for a sepsis infection in the first place? If high fever with very sudden onset, shaking, vomiting, lethargy doesn't do it, how does a child survive a septic infection (I know they do).


I have been fighting with this last question for a week...what happened in the ER...is it what should have happened (please, please, please) If it isn't, will anyone ever be honest with us about that? It would help so much.....Mike suggested that I call the hospital and ask them to sit down with us, which I have. I left a message for the care center director on Tuesday, just asking if it was possible to sit down with someone and review her chart, what happened that night, the decisions that were made, the doctors notes. I don't think they will, but it is worth a shot.....I have stopped obsessing over it and will just wait to hear, if I don't then I will decide what to do next. We have also requested her medical records....anyone know a pediatrician who would want to review them for us?


Most recently I have read that asplenia happens 1 in 2000 births....if it really is that common this might be the beginning of a long crusade for me to raise awareness...for now, I just miss Sophie so much, I ache, all the time. Thank God for my amazing family, my strong and loving husband, our beautiful daughters and the incredible support for family and friends. I know Soph is at peace and I try to cherish the time I had with her.....Please if you know anyone who can help with our questions have them email or call us

Wednesday, June 13, 2007

You want answers????

Well, we finally got the answers on Anne Marie's test, and her two spleens appear to be working fine, so finally I don't have to go in every night and make sure she's breathing....and the morning anxiety attacks have lessened. The hematologist at Children's hospital still wants to do one more test to confirm that the spleen(s) are not working overtime, but they said they have no reason to suspect it, so we are not too worried at this point. Breathing a little easier on that front helps.

We are still questioning the genetic component of it all, but in general the doctors don't seem to think there is a connection...Mike and I find it strange that of our two biological children (Rachel was adopted by Mike when he married her his ex--her Mom) one didn't have a spleen and the other had two....not really sure where to go with that, but we will probably keep hunting in the future.

I tried not taking Ambien the other night--what a disaster--at 4:00 a.m. we were basically all up (thanks to me) and Mike and I had a long conversation about what might be going on. He astutely pointed out that although I keep claiming to want to go to therapy, I haven't taken any steps to that end. I think he is mostly right, but I am also giving some credit to the fact that I do not seem to be able to make even the simplest decisions right now. Anyway, we have an appointment for tomorrow.....

Things are pretty relaxed at home right now, I really miss Sophie so much..I hate that our mornings and evenings are quieter, less rushed....I'd give anything for her to be pestering me for dinner, bath and bed. So far the hope that his blog would lead to someone else who lost a child to Asplenia or some researcher who knows something hasn't worked, but I'll keep it up because it helps me....

Tuesday, June 5, 2007

Frustration so bad it makes you cry

It's been such a rough week. We are still waiting on Anne Marie's test results to make sure her spleen and liver are functioning normally...it has been almost two weeks since the first test and a weeks since the other two--results were supposed to be back in 1-3 days, so we are very stressed out. It might bode well that we haven't heard, assuming that bad news would travel faster, but we're not always thinking rationally right now and we need some peace of mind...losing a child makes you extra paranoid about the other ones, at least in the immediate aftermath.

Also frustrating is the lack of information about anatomic (congential) asplenia...oh there's all sorts of information out there about how to prevent sickness in death in a child that has anatomic asplenia...but HOW THE HELL IS ONE SUPPOSED TO FIND OUT IF THERE CHILD DOESNT HAVE A SPLEEN??????? There's several easy tests, ultrasound, blood smears that aren't all that expensive--but apparently the "cost-benefit" doesn't justify the $71 blood smear when they are infants, or the cost of an "organ check" ultra sound....does that seem right? I mean insurance pays for Viagra alot of times for *&%@*$ sake and lots of other things that might be important...but as important as a child's life? And anyone with the attitude that it wouldn't be worth saving one or two babies a year isn't a parent who lost their precious, amazing, sweet wonderful little girl way too early. Even if the incidence is .06% (6 tenths of 1 percent) that would be about 2,400 babies in the US alone who wouldn't die each year---2400....mon dieu. At 4 million US births for year, guessing $200 per screening it would be $8 million...a mere $3,000 per life saved--if I ever get that money I will start a foundation in Sophie's memory that will help children get screened for Asplenia at birth.

I guess I just feel angry today...maybe tomorrow will be better....

Friday, June 1, 2007

blood test, boxes, and bags (oh my?)




We are really hoping to get the results of Anne Marie's blood test this weekend so we can breathe easy knowing she will be o.k. They are doing three tests, one to test for the Howell-Jolly (http://www.answers.com/topic/howell-jolly-body) bodies, the presence of which indicate a missing or non-functioning spleen. Since we know Annie has a spleen this will tell us if hers is working. The other test is futher confirmation, something called a pit-count and the third is to test liver function to verify that something they saw on the ultrasound is not a problem. The chances are small that anything will be wrong with her, but after what we have been through it is difficult to have any peace without knowing for sure.

Last weekend I bagged and boxed most of Sophie's clothes, it was extremely difficult. I had to rush through it so I didn't stop and look at everything and remember. I couldn't part with the shoes, mostly because she loved shoes so much--she would bring her shoes, or Annie's (or mine or Mike's or Rachel's for that matter) up to you and have you put them on, then she loved to take them off....We don't want to eradicate her memory, and there is some stuff I will never be able to get rid of...like the little pink tutu that she loved to wear.
I miss her so much...which seems like such an obvious thing to say. An amazing little girl, I would love to kiss her, hold her, tickle her or even spend all night trying to get her to sleep again, it's really sinking in that this is real, that she is not coming back and it is so hard.