Saturday, August 28, 2010
Now maybe I'll have the courage to enter in some more important photography contests... We'll see :)
Wednesday, August 11, 2010
So not really sure how to update our cardiology appt today. It was really overwhelming and a little scary, okay really scary. But I'm glad the doctor just told us how it is. So for this appt our nurse Deb came with me and Maggie. Well, we started with having an echo done and I expected everything to be okay with that and it just showing her normal PFO. We went back to the room and had an EKG and waited for the cardiologist to come in to give us the results of the echo and EKG. So she finally came in and said that she had received the results of the biopsy and said she was going to talk to another cardiologist about what needs to happen next. So anyway then she continues to tell us that Maggies echo was worse than her last echo and that looking at this shows that this is why her other organs are all having trouble. Maggies septum in her heart is not working as well. She asked me how invasive we wanted to go with Maggie and I said that we don't want to be too invasive because of all of her problems the outcome would not be very good. But that we would need to discuss everything as things came along. She absolutely agreed with me and said that she would not do a transplant on Maggie and she would not do a pacemaker on Maggie because she does not think Maggie would make it through that process and because if she did make it she would have deteriorated a lot to have made it and her life would not be good. So then she tells us that what we want to hope happens is that when its time, Maggie gets an arrhythmia and that is how she goes because it will be painless. Not sure what to think about this. I think I may have been in a little shock at this point. She says that she is going to see Maggie one more time and then she will probably transfer her care over to the heart failure doctor. Maggie is not in heart failure yet but apparently that is where she is headed. She tells us that because of her heart this is part of what is causing Maggie to have trouble digesting. So basically there is nothing we can do about that. There are a few meds that we could try to help the heart but there is nothing we can do to fix the heart. However she doesn't think Maggie can take the meds for this because Maggie has such a low heart rate. These meds will make it slower and she will need to be watched super closely if this is what is decided to do. She says that we can not put Maggie back on TPN because not only of the liver problems but because she gets infections so easily. If her heart rate goes high like when she gets infections she said that this is when the arrhythmia will happen which will mean Maggie will not make it. So not only can we not have her heart rate low, now we have to watch so carefully that it doesn't go too high. So she said that there is really no way to get Maggie to keep her weight or gain really. Basically, she says that we are going to watch Maggie starve to death which will make her heart give out. Unless another doctor can come up with some other way to get her to digest or get her calories without a central line. So there is nothing we can do about it. It is so frustrating to know the plan of your childs death and not be able to do anything about it. I can't even explain the feeling I have or how to move on with daily things right now. My head is just spinning in circles trying to come up with something. The cardiologist asked us what we were going to do for Maggies Make a Wish and we told her we were planning to go to Disney World (Thanks Brienn I am seriously going to email you soon I'm just spacey) the cardiologist thought that this would be great for Maggie but then asks us when we are going and we told her that Maggie has to be 2 1/2 to 3 to have a wish and her response was "push to get it done sooner!" We told her that we had tried to talk to someone about doing that and they said we couldn't and she said yes we can and that we need to push it get it sooner. I guess she doesn't think Maggies quality of life will be good at all in December so she wants us to do this trip as soon as we can.
So, so far all of Maggies doctors that we have seen agree that we need to make Maggie as comfortable as we can so she is not suffering. Its so hard for people to understand that although Maggie looks okay on the outside her insides are not well. She has lost weight and is not looking quite as good now and we are going to continue to see this. Maggie is way small for a two year old. On our scale at home Maggie is under 18 lbs, she is going to be 26 months next week and she is starting to lose weight quicker than she has been. We have made a followup appt with Dr Shoffner in Atlanta for the end of September. Our cardiologist wants us to see if he has any other ideas on what we can do to get calories in her since he also does not want her on TPN. I am praying that he can think of something and fast.
Maggie will be having the colonoscopy and endoscopy to make sure things look okay from that standpoint. This will be on Thursday, which she will also have some blood tests done and urine tests done. These things will check organ function. Being sedated is very scary for people with mitochondrial disease so please pray things go well with this. Please also just keep Maggie in your thoughts and prayers for this news that we have received today. We appreciate all of the love and support and being surrounded by such amazing people. Our neighbors all pitched in and got us a Flip camera so we can record everything. We are so thankful for this and can't even describe how amazing everyone has been. Also thank you to our nurse for coming with me to that appt, I don't think either one of us were expecting to hear what we did. Thank you all so much!!