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Had a good cry today

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

And asked God to take me instead of my son. Things are not looking good for him. Today was the first time that I had a good conference with 3 of his doctors. Primary, infectious disease, and pulmonologist. The surgeon was not avaialbe but, I was told that she did not want to attempt surgery as she did not think that he could survive it.

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.

AnneCan
Posts: 3692
Joined: Oct 2009

I am so sorry for all this; I can't imagine what a day you had. My thoughts are with you and your son.

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

Oh hun sorry to hear about your son

Lifeisajourney
Posts: 217
Joined: Apr 2010

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. Pat

OGammy01
Posts: 67
Joined: Oct 2010

Lori, I'm so sorry for the day you have had. Mothers should not have to go through what you are going through. But, I DO BELIEVE IN MIRACLES! my thoughts and prayers continue to be with you and your son.

Diane

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

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 kitties

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

I wish I could be there with you! You have my prayer's, love, and hug's. Anything else at all, just let me know.

Gail

okthen's picture
okthen
Posts: 232
Joined: Jun 2010

Oh Lori...I am so sorry...so very sorry.
You and your son, as well as his doctors, are in my prayers.
Chriss

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

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........Clift

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

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

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

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

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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!

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

I'm speechless. How very difficult for you. No matter how old they get, our babies are still our babies and it hurts so badly to see them hurting knowing there is not a lot you can do to make things better. I'm so sorry.

Hugs - Tina

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

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)

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

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

bruins1971's picture
bruins1971
Posts: 227
Joined: Nov 2010

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

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

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

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

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.

Don

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

I'm so sorry to hear that. You are going through so much right now. I'm praying for you both.

Kim

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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.

-Craig

sasjourney
Posts: 395
Joined: Jul 2010

Lori,

I am so sorry that your son is going through all this. You are right, life can be so unfair sometimes. I believe that this life on earth can be wonderful, but also full of suffering and pain and some people get more than their share of pain and suffering. I don't know why and can't understand it, but I truly believe the reward will be in heaven. No more suffering or pain and just peace,love and happiness for all eternity, which is way longer than our short time here on earth. You and your son are in my constant thoughts and prayers. May the Lord give you strength during this time. His arms are wrapped around you...

With all my love,

Sara

soccermom13's picture
soccermom13
Posts: 226
Joined: Feb 2010

are with you and your son. I am so sorry that you have to go thru this trial and that your son's health is not good. Your family is in my prayers.
Many hugs
Shanna

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

I'm sitting frustrated because there just are no words...my heart aches for you...I am holding you and your son and his doctors up in prayer.
(tender tearful hug)
April

VivianGB
Posts: 46
Joined: Jul 2010

Lori, prayers going up now and asking for a miracle!!!!

My thought are with you and your son.

Vivian

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

aww Lori I am so very sorry. I can't imagine a more helpless feeling. I wish his Drs had talked to him about it more, I know they are human, but they should not put that on you. My prayers go out to you all. {{hugs}

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Oh, Lori- Just when you have dealt with so much heartache- I'm so sorry.
I'm writing this through tears- know that I am praying for your son, his doctors, and you (and all the family).
A very therapeutic song that gets me crying each time, but is also comforting is "Praise You in this Storm" by Casting Crowns. If you've never heard it, please please check it out on itunes or youtube, or I'm sure you can find it somewhere. I listen to it over and over when I'm going through tough times.

I can't imagine your heartache- I am fervently praying for a miracle for your son, as he very much needs one.

Hugs,
Lisa

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

Lori, This is so hard on you. I feel heartache. I just wish that God would help your son and heal his disease. I pray for a miracle for your son. I will be thinking of you and praying for you and your son. - Lucy

elaineG's picture
elaineG
Posts: 20
Joined: Oct 2010

Lori
I am so sorry your son is going through this terrible time, and my heart goes out to your son, to you and the rest of your family.
I am wishing and praying that he recovers.
Take care
Elaine

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Erinb
Posts: 295
Joined: Apr 2010

Lori, I am sorry about your son. I couldn't imagine the pain you must feel and how exhausted you must be mentally. I will pray for you and your son.
Erin

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Oh, Lori.

I do pray things will turn around for your son. I live with a walking miracle every day (my husband), so I definitely believe in miracles. I just pray it is your son's turn to receive one.

He is fortunate to have such a caring, wonderful mom, and that will sustain him through whatever comes.

I know this is hard to do, but try to remember to take care of yourself in all this, too

*hugs*
Gail

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I'm so grieved for you, and your son. I am so sorry this is happening. I wish you relief and comfort, and blessings for you and your son.

Love, Leslie

mom_2_3
Posts: 965
Joined: Nov 2008

Lori,

Thinking of you and praying for your family.

Amy

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

everyone here loves you,
its a simple pray with trueth for us all

god grant me the wisdom to change the things i can,
the patience to accept the things i cannot
and the wisom to know the differrence.

my prayer for you is for peace and healing for you both.
god bless you and your son,
love pete

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Lori,
I have been thinking about you and your son. Oh Lori, I am so very, very sorry your son is at this place. You have been an amazing mom to you son. I want a miracle for both of you.

All my prayers,
Kathleen

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

It's taken me a while to respond, because what can I say?
When I read your post, I did not see you crying over your son. I saw in my mind, a mother, on her knees, sobbing her heart out, head on the bed, hands clutching at the blankets, then at her heart, bargaining with God to make things right. It nearly broke my heart.
I have no advice. Only thing I can do is send you my love and your son, my prayers, such as they are.
Winter Marie

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

Lori, I can't even imagine what you're going through. I am so sorry.

dorookie
Posts: 1736
Joined: Jul 2007

Ms. Lori, I am so sorry to hear this, my heart just cries for you and your son and your whole family. No mother should have to go through this. I will be praying for your son and your whole family. Please try to stay strong and let the doctors do what they do best, miracles happen everyday and I will pray for one for your son...

God Bless YOU

HUGS
Beth

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