DS Update
Just when I thought my world couldn't get any more worse off than it is now. You would think that this whole thing is the worst it could get. Right?
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Some opinions are better left unsaid. But as I say that I'm sorry but I always opt for blood transfusions because I suffer from extremely bad anemia and every time I am hospitalized and procedures are done I know that in order to save my life I would need transfusions. But not only is blood donated but so is things like breastmilk. Guess what before my milk supply came in for the first 3 days of my sons life I opted for him to get donor breastmilk too. Because breastmilk is one of the best milks for babies especially preemies. These donor products are suppose to go through rigorous testing so what OP expected was not for some news like this. And when you have a child in the hospital you are going to take whatever steps is necessary for them to come home healthy and well! OP did absolutely no wrong and I would have gladly done the same thing! I wouldn't refuse a damn thing that would help my child! I really hope it wasn't tainted blood because that hospital would not survive once I was done with their asses!
@thewife
One can only hope you never have to go through what Murdock did. Don't you presume to say you could stand to refuse a blood transfusion to YOUR CHILD who needs it to battle cancer. Until you have been directly in that spot, you cannot know what you would do.
Congrats on making a grieving woman/mother feel worse. Well done.
Yes, the way that chemotherapy works is that it attacks not only cancerous cells, but everything else that acts as fast growing. This is why hair falls out, and gastrointestinal sores are very common. The cells there grow fast.
It also kills everything in the marrow, including healthy blood cells. This causes the ANC (absolute neutrophil count) to diminish as well, which is a very important part of the immune system. Other blood products, such as hemoglobin and platelets are affected as well. Usually after chemotherapy is complete, it takes approximately 1 week for the levels to hit their lowest, and then they start climbing back up. For ds, the average in patient stay was 4.5 weeks.
It's so common to need transfusions as well as other medications as preventative therapy, such as Fluconazole for mucositis/ candida overgrowth. Cancer patients depend on all of these things, and all are absolutely expected to be safe.
@the wife I caint with you! If she hadn't consented he wouldn't have been with her as long as he was! How f*** ing insensitive can you possibly be! He was battleing cancer and had nose bleeds causing his blood volume to deplete his body couldn't make it fast enough! The transfusion kept him through his treatment! It is no way her fault even a tiny bit! You have probably never been in the situation she was in were she had to make decisions to save her sons life! He survived damn cancer at 14 only to be takin away because of something that was sopposed to save him! Don't speak on something when you know nothing! Read her previous post! He had 0 platelets! The hospital ducked up not her. Her sons was unexpected he was 14 and all was well his last appointment he got sick and s*** went down hill to fast to stop. That is not the same as an elderly person passing in there sleep. She deserve answers.
Thank you all so much. I've painted a picture of what his last day was like in another post. I wouldn't wish that on anyone. I get daily flashes of that day, and I'll spare those here.
I'll say that I bet anything that anyone who sits and watches their son deteriorate right before their eyes would want answers. Not having them brings so much more torment. Dh and I spent many days supporting and taking care of ds throughout his treatment. We sacrificed. We researched. We asked questions that we knew to ask. We did everything in our power to help ds and keep him safe. So yes, the torment of not knowing what happened to him will be there until we get answers. I will continue to fight for him and honor him for as long as I live, and if that takes every bit of my time and energy, so be it, because I can guarantee that he would want to know, too.
I just want to say I'm so very sorry for everything you're going through. I can't imagine. Ever.
Offering another opinion on autopsies- my mother died suddenly in her sleep in her 50's. We didn't do an autopsy and it tortures me every day that I don't know what happened to her. Knowing what happened and why it happened is the only way for some people to get closure. I will never have that. I hope Murdock and her family somehow get some peace someday. Thoughts and prayers to you.
My thoughts and prayers are going out to you OP. You did everything possible for your son and I know he knows that as well.
It's scary that the virus wasn't picked up in the blood before when they test for other things. I really hope something changes medically as a result of this and your son can help save other people.
? oh Murdock I am so sorry for this news. I wish I could just hug you so tight right now and take away all your pain. You are living a mothers worst nightmare and have been so strong. It's just not fair. I hope you get answers and can have closure and take action. I'm sorry, I could say sorry over and over and I hate that it doesn't fix or change anything. ❤️
I thought about deleting them but wouldn't that just make things worse when people read the comments and go look for what I stupidly said.
I never insinuated she had fault in anything. Honestly it was from a different point of view and not judging her again all. When I said she could refuse any treatment I really meant it as informative for future reference. There was another momma on here who any blood products were against her religion and she could refuse. I've also been taught that you can refuse. There's a difference between empathy and sympathy. I understand she's heartbroken and hurting for the loss of her son and I'm praying for them all. Empthy is putting yourself in someone else's shoes.
Wife, while I don't understand how imposing your view about autopsies being awful on a mother talking about her sons autopsy or implying Murdock should feel quilt for not refusing the transfusion can sound any better in your head I'll give you the benefit of the doubt and just suggest deleting your comments.
I really didn't mean any harm and I apologize for any offense I've caused. You all are right and I should have never said anything. I am really praying for them. It really sounded alot different in my head but I can see how it could have came off as snarky or b**** y which wasn't my intent.
@thewife if you're going to comment something like that, at least take the time and read op's previous posts. You would see her son had cancer. I'm going to assume if he needed a blood transfusion, he NEEDED it. It was not really an "option". To go and make a comment to someone like that who just lost their child is beyond me. I don't understand how you could do that. You mentioned that an autopsy is a bad idea because you might wonder if you could have prevented it and how it'd make you feel, how do you think your comment made her feel?? Think before you comment next time. Seriously. ?
@thewife, did your comments bring her son back? Did it erase the fact that she found this information out? Did it help the situation at all? Please think about what you say, before you say it. Your comments weren't helpful, they were hurtful.
OP, I am so so SO sorry. I will continue to pray. This definitely comes from left field, I couldn't imagine the pain and confusion. I wish I had the words to make you feel better, but I know that's impossible right now. ?
I'm so sorry Murdock. I'm just so sorry as one mother to another.
For pp; you can't always refuse treatment when it comes to children. Drs/hospitals etc can fight parents who choose to not follow protocol and can actually lose custody so your info isn't correct nor helpful on this particular post. Blood products save lives and we should be able to trust that we wouldn't get tainted blood in 2016.
No words for that.
Thank you for the support. I am going to give dd2 a bath and relax.
I don't blame you or mean any disrespect by saying it. What works for some doesn't work for all. I do hope you get all the closure you are seeking. You can refuse any medical treatments including blood transfusions. I get that you obviously wouldn't refuse something you thought would save a life but you always have the right to choose. Even if you sign consent and have second thought right as they wheel you from the room you can still refuse it. Prayers for you and your family.
@thewife, my son's body was cremated, so they won't be doing anything extra to his body. They took samples from his major organs before his body was sent for cremation.
I totally respect your view and opinion on autopsies, but for me, there is no way I could go the rest of my life and not know what happened to my son. His death was so sudden, shocking, and unexpected for us. Answers bring closure for me. And regarding the transfusion, there's no way I would have known and there's no way I would have even been able to say no to giving him medical treatment anyway, so that part, I do have closure with. There are many things that I do have closure with, but "what happened" still needs it and I will be damned if I don't get it.
Lord Jesus bless this family through their continuing trials. Please put your healing hands upon their already fragile hearts and minds and guide them through yet another dark and confusing time with your grace. Please allow them to heal and receive the answers they need to do so. Please allow them to come together and love each other and support each other through this next wave of grief. Father, make this family strong in heart, mind and spirit so that they may make the right decisions while they process this untimely news. Make them whole again through your grace and everlasting love. Amen.
Reasons like this are why I don't believe in autopsies. Knowing why or what caused their death won't bring them back. In situations like this it becomes extremely hard because you then wonder what if and instead of grieving you become more hurt and angry. Wondering what if you had said no to that transfusion would he still be alive. I'm sorry for your loss I truly am but will having his little body autopsied bring him back or really bring you closer in some sense.
I say all this from experience. My father died in his sleep one night at the age of 50. Nothing they tested in the hospital would give a cause. My sister, mom and I all talked and decided we wouldn't want to put his body through such a traumatic procedure just to know why as it wouldn't bring him back and we couldn't have a do over to fix the issue.
Thank you all so much.
@NOONE, something would need to be done. I don't know what will happen, but we will take action.
I talk to ds every day and can't even find words for him other than I'm sorry today.
Mur if they did cause this I pray you find the strength to come to terms with it. But I am never one to say sue by damn it if they are what cost you your baby you need to so that they will be more cautious in the future. I also would love to help you raise awareness some how so that this doesn't happen to another poor innocent child that is seeking help from medical staff. I'm so so so sorry the more I read the more my gut twist into knots?
My heart breaks for you and I'm furious for you! Momma plz plz know this was in no way your fault you did everything in your power short of switching places to save your baby. You are so strong and brave. Don't blame yourself momma they should have done thorough testing before giving the platelets to an immune compromised person. Please pm me if you need to talk or yell at someone.
I'm so sorry that this has been added to your plate.
I feel like blood that is going to be transfused to immunocompromised patients should be put through more tests.
If you decide to do anything about this, like maybe bringing this up to the hospital or maybe something bigger and need help getting the word out, I will be happy to help.
I hope the same. I don't want this to be it. I hope it's just a huge misunderstanding. But it looks like he was given infected platelets, for sure.
Woah ☹️️ I know you want answers , .... but I seriously hope and pray that infected blood , that was supposed to be clean and helpful, isn't the answer . That is just not an acceptable answer to all of this ... ? I pray that the answer was related to his cancer and his cancer alone . I pray that , although he's gone, the cause was just unavoidable. I am so sorry you and your family have to go through this ???
@keely, if his results say that his death was caused by this virus, hell will be raised. We are going to have to wait these long days out until we get that information though. Even if it wasn't his cause, he still received tainted platelets. They will be hearing from us.
I can't imagine how you're feeling, knowing this was avoidable and a mistake on the hospitals part. I know this is the last thing on your mind now and it won't change what the hospital did but if this turns out to be a mistake on their part you should sue the s*** out of them. Ugh I'm so upset for you. I'm so sorry you're going through this ?
The CDC requires that all donated products are tested for West Nile, as of 2003 like you stated. The unfortunate part is, like his oncologist said, (and similar to dormant HIV infection) it is rare but possible for a virus to be present in such small quantities that testing cannot detect it. Especially for someone as immunocompromised as your son, this can be deadly. I'm so very sorry for your loss. This must be so very heartbreaking.
@Gia, I tried to read into it a little yesterday, but can't focus enough. I did read that they have been screening for West Nile since 2003.
I also asked her if the virus would have attacked him faster, since he was immune compromised. She said not necessarily. It can lay dormant and not show up at all for days. I swear I thought she said "12 weeks" for it to do anything if it is going to. Some people never even show symptoms.
My poor kiddo had an ANC of 0 at the time of this transfusion. No defense at all. Knowing this and that those platelets were tainted just doesn't give me any hope for the results.
Im very sorry Murdock.
They definitely need to take responsibility for their mistake.
I know it wont bring your ds back, but it will bring justice.
Ive had 2 family members die already because of the lack of medical attention. Over a twisted ankle and an 104 fever. It sucks that the people that we feel should protect them, are the ones harming them. Very much love and prayers momma❤❤❤
Stay strong✨✨
Thank you all. I will keep you updated on the final report. Please pray that they've made a mistake. I know it won't make it much better, but I don't know how much I can take if it was by human error.
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During my three years on BB, my heart has never dropped so much as it has from reading this post.
I am so sorry. My heart goes out to you, and I'm praying extra hard for you tonight. This is devastating news and I can't imagine what you must be feeling.