Had a good cry today
Here is where things stand right now. He has underlying lung diease (Bronciactisis) that has caused his "branches" in his lungs to harden and quit working. He has colonizing MRSA (staph) in his lungs that all the best antibiotics have not worked on and it continues to spread. He has pleural effusion (we just keep pumping the blood and fluid of from his chest tubes). He is being treated now to prevent congestive heart failure due to all the fluid pressure on his heart and the working overtime that the heart is doing. And of course his immune system is now looking about the same as a dying AIDS patient. After 5 platelet transfusions yesterday we managed to get them up from 2 to 18. He now is severely anemic ... this having happened over just 2 days. He lost 8 lbs in the last 3 days.
I asked what is our next step? I was told we will try to get the lung to reinflate AGAIN. It's been 4 weeks now that we have done the same thing over and over again with no results. There is no further line of antibiotics that can be used for the MRSA. I was told that at this stage the doctors are quote "Practicing the art of medicine". Meaning that there really isn't anything else to do but keep on doing what is being done. I asked what do we do in a week if the lung still isn't inflating? They said "We don't know". I was told that if he insist, he can go home but, he will not be cured and will be back to the hospital or dead within a short period. I asked his prognosis and was told "Very Poor". We had a very bad incident last night where he almost bled out when a dressing change was attempted. Emergency transfusions were needed to stablize him.
None of the doctors had talked to him about things so that he understood so he asked me today and I told him the truth and he asked "Why can't the doctors just tell me that?" I explained to him that doctors are people too and when they can't cure or help they feel bad and feel that they are failing. That we need to remind ourselves of this. Doctors have feelings too. He is getting a lot of preferential treatment by the staff (having worked in hospitals I know what these things mean).
Thank you for letting me share this as it's the first that I've really sat down today and thought it all through. It's been very therapeutic for me. I'm afraid I am losing my son this time. I wish that I could trade my life for his. He's had such a tough life and been such a great kid. Sometimes things are just so unfair.
Comments
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sorryAnneCan said:Lori
I am so sorry for all this; I can't imagine what a day you had. My thoughts are with you and your son.
Oh hun sorry to hear about your son0 -
Just wanted to say how sorry
I am for you and your son. As a mother, I can understand the pain you must be in. Wish I could think of something to say other than how bad I feel for you both. I will pray that you both can come through this terrible time. Pat0 -
Dear Lori
I am so very sorry the news from the doctors was not more promising for your son.
It is so very difficult to see our loved ones in crisis and not be able to fix it.
My prayers coming your way that there may yet be something to help your son, and also prayers for you to find the strenght you need as you fight the battle for life on two fronts.
Hugs,
Marie who loves kitties0 -
So very sorry...........okthen said:Oh Lori...I am so sorry...so
Oh Lori...I am so sorry...so very sorry.
You and your son, as well as his doctors, are in my prayers.
Chriss
Lori, This is when we really have to draw on our faith to get us through. We believe but now is the time to really deep down know, what you know, what you know, and know that there will be a day that all of us will be together without pain, suffering, and with nothing but serenity and peace. There is nothing but love and memories to share right now with each other and let him know how much love there is between the two of you...remember that should something go wrong that you will be together again ...that is the hope for all of us, now is the time for faith in force.......Love to you and your son and God bless you both........Clift0 -
Oh, Lori, I'm so very sorry
Oh, Lori, I'm so very sorry that your son is in this state. And no mother should have to go through such pain. My thoughts and prayers go out to you and your son tonight. God bless you both and give you strength. Cynthia0 -
Lori...LivinginNH said:Oh, Lori, I'm so very sorry
Oh, Lori, I'm so very sorry that your son is in this state. And no mother should have to go through such pain. My thoughts and prayers go out to you and your son tonight. God bless you both and give you strength. Cynthia
I am at a loss for words. I cannot imagine what you are all going thru. I am so praying for the entire family. Hugs to you girl.
Jennie0 -
My heart aches over your pain.idlehunters said:Lori...
I am at a loss for words. I cannot imagine what you are all going thru. I am so praying for the entire family. Hugs to you girl.
Jennie
Please come here any time you need us, there isn't much we can do, but pray for you both. I know that we must all accept death, we don't have a choice, when it's time it's time, but those words don't make us feel any better. I am so sorry that he has had such a hard, painful life. Life is not fair. He is so lucky to have a Mom you!
Lori, you probably knowbthis, but be extremely careful with the MRSA, you are not suppose to be around it, especially while undergoing chemo. Also, with all the stress you are under, you are susceptible to shingles. You may want to discuss your situation with your ONC and get on some antibiotics and eat really healthy right now. Just to be safe.
Please take care if yourself. I can not even begin to imagine everything that you are dealing with right now.
Hugs, Raquel0 -
Dear Lori!Nana b said:My heart aches over your pain.
Please come here any time you need us, there isn't much we can do, but pray for you both. I know that we must all accept death, we don't have a choice, when it's time it's time, but those words don't make us feel any better. I am so sorry that he has had such a hard, painful life. Life is not fair. He is so lucky to have a Mom you!
Lori, you probably knowbthis, but be extremely careful with the MRSA, you are not suppose to be around it, especially while undergoing chemo. Also, with all the stress you are under, you are susceptible to shingles. You may want to discuss your situation with your ONC and get on some antibiotics and eat really healthy right now. Just to be safe.
Please take care if yourself. I can not even begin to imagine everything that you are dealing with right now.
Hugs, Raquel
please keep feith and hope,our prayers ,vibes, and thoughs are with you and with your son!, And please take care of you too!.
Hugs!0 -
Speachless also!Kerry S said:I just don’t know what to say
Lori,
Darlin, I just don’t know what to say that will help you, except that you are loved here.
Kerry (old coot that is speechless)
Lori with all you are going through you still had time to respond to a post and give support to someone else. You are indeed a power of example. I am so sorry you are going through this all I can do is pray. and that I will.
Tom0 -
Keep The FaithTMac52 said:Speachless also!
Lori with all you are going through you still had time to respond to a post and give support to someone else. You are indeed a power of example. I am so sorry you are going through this all I can do is pray. and that I will.
Tom
How can I possible put into words how sorry I am for what you are going through. To battle cancer yourself is certainly hard enough but to watch a child go through this is terrible. Just like miracles happen every day and people with stage 4 are now cancer free so too can your son be healed from his disease. Father I ask that you place your hand upon this child of yours and set forth a healing process. Be with Lori during this time to give her the strength she needs to deal with anything that is being thrown at her. Lori you are a great person and the devil is trying his hardest to get in between you and God so don't let him. I ask anyone on this board who believes in The Lord to say a special prayer today at 6:00pm EST to raise Lori's son up to the Lord that he may place his hand upon him and start the process of his blessings and to make her son whole again. It is said that when more than two people gather in prayer that the prayer shall be answered so let us gather at 6:00 through the greatness of the internet and pray for Lori and her son.
God Bless,
Bobby0 -
Loribruins1971 said:Keep The Faith
How can I possible put into words how sorry I am for what you are going through. To battle cancer yourself is certainly hard enough but to watch a child go through this is terrible. Just like miracles happen every day and people with stage 4 are now cancer free so too can your son be healed from his disease. Father I ask that you place your hand upon this child of yours and set forth a healing process. Be with Lori during this time to give her the strength she needs to deal with anything that is being thrown at her. Lori you are a great person and the devil is trying his hardest to get in between you and God so don't let him. I ask anyone on this board who believes in The Lord to say a special prayer today at 6:00pm EST to raise Lori's son up to the Lord that he may place his hand upon him and start the process of his blessings and to make her son whole again. It is said that when more than two people gather in prayer that the prayer shall be answered so let us gather at 6:00 through the greatness of the internet and pray for Lori and her son.
God Bless,
Bobby
Lori there is so little that I feel I could say to you. Your pain must be so deep....you are such a shining example for us of all that is strong and good and generous in this world. If I could take one bit of your burden I would.....
sending you my love and support
maggie0 -
Sorry
I'm so sorry to hear that. You are going through so much right now. I'm praying for you both.
Kim0 -
Lori
Lori, I know if there is anyone who is on top of things and know what's going on, it is you. You are there and trying everything.
Just reading your post just makes me feel so badly for you and your son...the most painful thing is to watch the people you care about suffer and there does not seem to be anything that the medical staff can do - it sounds like they are doing all that they know to do, from your description. I'm sure if there was another course, they would certainly try it.
You've got so much going on with yourself and your family right now - all of us can feel the pain and anguish in your post.
Just wish I had some words, but again, they fail me at a time like this. Just know that we are all riding in the back seat with you - hoping for the best.
This is truly a heartbreaking story and I would not wish it for anyone...I know you have an incredible strength and are versed with medical situations, so you are dialed in on the realities of many situations. Just be with your son and give him a hug from all of us.
-Craig0 -
Lori,maglets said:Lori
Lori there is so little that I feel I could say to you. Your pain must be so deep....you are such a shining example for us of all that is strong and good and generous in this world. If I could take one bit of your burden I would.....
sending you my love and support
maggie
Words can't tell you
Lori,
Words can't tell you how sorry I am for this to be going on in your life, now or ever! No mother should ever have to go through this, but you are handling ths with, well, a mothers love. Know that we are all praying very hard for you, your son and his medical team. We will be here for you, just lean on us when you need to share your burden and we will be there for you. Hugs and prayers.
Don0
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