They came for me today.
Folks I’ve known for years now. Folks who have seen me through the transplants, the illnesses, the seizures and the surgeries. Through good blood-work and bad, these folks have always lent me an ear when I needed it. Folks I’ve had the privilege of sharing 3 of my sons with. Entrusting them in their capable hands.
They came for me today.
But it doesn’t really make the *talk* any easier, now does it? For them or for me. And yes, our Favorite Fellow had the *talk* with me at Thanksgiving, when the GVHD flared then and he couldn’t sustain his temp and his skin was all blistery and melting away. But this time, *sigh*, this time is different.
This time, it’s the folks who know us so well that have to be the bearers of bad news. The messengers that discuss DNR orders and how and when to decide when enough is enough. Can there ever truly be a time when I have to say ‘enough’?
His condition isn’t very much changed from yesterday. They tried to decrease his immunosuppression just a bit by reducing the steroid dose and stopping the Prograf. It worried me then and it worried me this morning. The last time they stopped the Prograf was Thanksgiving. I think we all remember how well that went.
So when I came in this morning, after only a couple hours of fitful sleep, and saw the rash, my heart fell. My immediate thought was please re-start the Prograf. And they did. The steroids were increased as well. So far, no blistering, just a bumpy rash.
The biggest set back he had over night was with his ventilator settings. He has been on pressure ‘support’ since his original intubation at Thanksgiving. The adenovirus, the VRE, the excess fluid and the shear longevity of his intubation have all contributed to his lung’s inability to work effectively. So they switched him to both pressure ‘control’ and pressure ‘support’, increasing the settings as needed.
Capt Snuggles is a balancing act on so many levels. His kidney’s are weakening along with his lungs. There is a very real possibility he could end up on dialysis. If his lungs continue to weaken, a different ventilator will be brought in – one that does all the work of breathing. The one you unplug when you finally say ‘enough’.
It’s so hard to formulate thought when someone is calmly discussing at what point a DNR order should be created for your son. When someone says that you should call your family and ask them to visit, that maybe now is the time to let the boys have some time with their baby brother, when someone says these things to you – what do you say in return? Cognitive thought leaves you and all I could think was “Who the hell am I going to call?”
My mother ran away years ago, my father is 70 and won’t want to drive down from Chicago by himself. I can’t expect my older kids to run down from Chicago, leave school and do what? Say good-bye to a baby brother they never met?
My mother-in-law wanted to come down this afternoon, but the roads are bad with snow and she was upset, I surely didn’t want another catastrophe on my hands, so I told her to wait. Sister-in-law called to say they’ve got sickness in their house – I told her to stay away, the last thing we need is another bug.
How did we ever get to this dark place?
It’s almost comical in a near hysterical way – the one bright spot late this afternoon was his adeno counts coming all the way back down to 5 million from last night’s 15 million.
Life is a fickle bitch sometimes, isn’t she?
Someone asked me if it was okay to pray for us. Absolutely, Please and Thank You, feel free to send all the love and positive energy you can muster our way. I may struggle within myself about the Powers that may or may not be. But I don’t care if you pray to Vishnu or Buddha or Allah or Yahweh or Jesus or G-d or even, Zeus himself. I want those positive thoughts. I need those positive thoughts. I will be greedy in my quest for as much love and good, wholesome, positive energy as I can squeeze from you.
Does that sound fair? I will pour all my dark, heavy fears, hopelessness and negative energy out into the universe and you guys will send it all back, bright and new, a hundred times lighter and more positive than before.
*sigh*
Captain Snuggles is waiting……
Transplanted Thoughts 
I’m posting this and emailing it and tweeting it to do whatever I can to get as many people as possible thinking about you and David. I am with you in spirit and wish I could do better than a virtual hug. I am hoping and praying for better news tomorrow.
Kirsten
Yes, call the older siblings down.
Yes, call the younger siblings in.
Yes, get your husband by your side.
Yes, Yes, YES.
If this is, indeed, that time then yes, call the troops. Why shouldn’t you? Why should you do this alone?
Yes, people might have to call off work. Make uncomfortable plans. Yes it might be tough. It is going to be a son-of-a-bitch to go through. Amy, you have gone through this (mostly?) by yourself up until now…my God, you need, no you DESERVE, to have someone to hold YOU and comfort YOU for awhile.
and then, everyone will get it all together and spend time with David. I pray that you will be able to hold him soon. Sniff his head. Take photos of every single inch of him, no matter what he looks like…I’d come to you if I could. My heart is breaking right this very moment. I am so incredibly sad, but not hopeLESS.
I believe in God. I believe that children, like Captain Snuggles, are going to be fully healed when they are called home and will know nothing but complete joy when they leave this Earth. I believe that God loves the both of you, so very much…and you are not alone. Not for a moment.
I will keep praying, my friend. I will believe that his healing is possible.
Sending you all of the love and good thoughts that I possibly can from over here on my side of the continent.
if you need me, anytime…240-727-0773. I mean it.
love,
Mindy
This is my first time stopping by. You have our prayers. And we pray. A lot. You have them all. I wish I could fix it.
All of my positive thoughts are with you. Sadly, I have had to make the terrible decision to let my baby pass away in peace and I understand what you may be feeling. Just know I am thinking of y’all.
Amy we are all there maybe not physically but you and the Capt are never out of our thoughts. Just know if you need to talk we are all here. Thank you for sharing your journey with us.
Tears, tears, tears.
I wish I could sit with you, there in that hospital room. I wouldn’t say a word, because what can really be said at a moment like this?
But I would silently pray for you, as I’m praying for you now. That God’s presence will fill the room. That there will be peace. That you will sense angels surrounding your sweet child. That you will know what to do. And that you will feel love and comfort, and all the darkness will disappear.
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Amy,
I agree with Mindy. Call them all. Let them come. I wish I could get in the car right now and drive to you. There’s nothing I could do but be there. So, I’ll try to do it from a distance. I’ll send back my thoughts, my prayers as bright and new and powerful as possible. I’ll tell my friends and they’ll tell theirs and hopefully you’ll feel us in that room with you.
With you,
Amy
Sending all sorts of positive thoughts your way.
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Praying for you and your sweet boy as hard as I know how. I’ve sent out prayer requests to everyone I know. I wish I could do more.
We will gladly take all the negative energy, you just keep pushing it off of you!! Sending you postive thoughts, prayers and strength!!!
((HUGS)),
Sairah
My thoughts and prayers are with you and your sweet baby at this trying and heartbreaking time. As a mother, my heart goes out to you. God bless you and your family.
Oh Amy,
What do you say? I wish I could be there for you. Sat by Davidson bed with you, hold your hand.. I’m so sorry.. But yes, call! Get all the support you can get. You shouldn’t have to keep going through this alone.
I’ll pray for him and you.. Send all the energy I have your way. I won’t give up, and you don’t either!!!
Stacy
God BLESS you and your son. My heart and pryaers are with you.
Well, this is Captains dad speaking. I want to thank all of you for your thoughts, Amy can use them. I have never believed that David would not get better and I still believe with all my heart he will. He has come too far now for me to stop believing. He will come home I know he will. What would I do without him? I already have a hole in my heart from Nate and not sure I can do that again. So you folks keep thinking of him and I know he will be home. He is a fighter and he is not giving up and neither am I. Get better my little dude!!!!!!!!!!!!!
Sending you ALL my prayers.
Oh Amy, call them, you need them right now, you and captn snuggles both. I am here, thinking and praying for you guys. I am only a short drive a way, if you would like I can come and just sit with you this weekend, be a shoulder to lean on, anything you need. {{hugs}}
I’m stopping by from Redhead Riter’s BF Community where Mama Penguin posted the link to your blog post.
I have no words but I’m sending lots of warm and positive thoughts, prayers, and hugs your way,
I’m so, so sorry.
Your strength is so amazing. Your love, completely palpable, even through the internet.
My thoughts and love and light are with you and your son right now.
Mama P sent a request and so here I am. There are no words, of course, just tears and hope and all the positive thoughts for you and your sweet little guy. For strength and comfort and whatever it takes, whatever is needed.
My heart is breaking for you..
I know I don’t know you but I followed a link on a blog frog community. I am sending you all the positive thoughts, prayers, energy and love I can muster. You could call someone for you. So you’re not doing this all alone. Praying hard.
I am also here from Mama P’s call and just want to reach out my arms and offer a hug. There are no words to express the difficulty of what you are going through. But please know that we are all out here sending our deepest healing prayers and love to you and your little boy. My heart goes out to you.
I am surrounding you both in positive energy and prayers. I wish there was something more I could do. I have been praying non stop since I first found your blog. Please know that there are so many people doing the same.
Amy, the tears and pain I feel for your family is nothing compared to how you feel. My children have other special needs, so this medically is way out of my league. We had a snow storm today and the kids school was closed, then my internet has been down and only could read the first 5 lines of this post for hours. It is now 2:15 am and having read all of it now has me sobbing. I will send out an emergency e-mail to the school officials and there will be an instant phone chain asking for prayers for God’s child “David”.
Needing more assistance for medical equipment doesn’t mean David has given up – it could mean he is saving energy to fight. I don’t claim to know when “enough” is, but “IF” that time comes you will know in your heart – there won’t be any regrets – God will be holding you then. Holding on to Capt. Snuggles beyond what is “suggested” isn’t greedy, parents always know best and God has done some amazing miracles. Go with your heart, your motherly instinct, and never give up hope. I see all the responses, I wish I could come meet and just sit with you. I wish I knew where you are or how long it would take me to get to you – but really it doesn’t matter if I am here or there – I feel like I have known you for years and I can do exactly what you need me to do here in my own neck of the woods and do all of my own staring into my own disorganized life – while thinking and praying for all of you where ever you all may be. Blessings, (((((hugs))))), ❤ <3, thoughts and prayers your way. Keep us all posted as you can.
10000 Prayers for you.
My first time of stopping by. My heart aches for you. Sending many prayers for healing and comfort your way. God be with you, and may He wrap His loving arms around you, your family, and your sweet son.
Hugs and Prayers for all of you. I’ll pass this on to others.
You are in my prayers!
Lifting you up in prayer.
Would drive to the hospital and help hold you up if I could.
I’m stopping by at Mama P’s request. I will think of you and Captain Snuggles today and send all the positive vibes I have.
Much peace to you.
I’m praying for God’s love and comfort to surround you, and for his perfect touch on your precious baby boy. God never promised that life would be fair. He did promise to be by our side every step of the way.
My heart is with you! Sending you positive thoughts and love!
Oh Amy, I am at a loss for words. Sending positive thoughts your way and lots of strength to get through this endless struggle.
Love and prayers to you.
I’m praying for your son, your family, and—very specifically—you.
I agree with Mindy. Stop saying no to those who want to come. Call everyone you know. Accept help the way you’re willing to accept prayers.
May god bless and keep you, may He work miracles right in front of your eyes.
This is my first visit here. I am keeping your son in my prayers. I pray that all your prayers are answered and that God shows us the miracles that only He can do. ((HUGS))
My thoughts and prayers are with you and your sweet baby at this trying and heartbreaking time. As a mother, my heart goes out to you. God bless you and your family.
I said a prayer and am sending you a hug with strength.
I just heard about your situation and I am so very sorry. I am praying that God will hold your little one in His hands, but I know He is already doing that. I have lost a child and have been in one way or another where you are now. It is difficult at best….no, it is horrible. I wish I could change things for you but I know I can’t so I will pray for your strength, your courage, and your faith….and I will pray that your son will be blessed in whatever way is best for him.
I was visiting Donna and read her post about your precious baby. I will be praying for your little one and please know that God is with him, holding his hand, comforting him and will not leave his side. Also, try to feel his arms around you, giving you his love and strength.
Shawn
I followed you over here from a suggestion from The House on the Corner blog. Please be assured that I am praying for you and for Captain Snuggles. I have put out a prayer call to my Facebook friends, as well. It is my prayer that God will sustain you, reveal Himself to you, and give you mercy with your sweet son. As a mom and grandmom of 12, I wish I could enfold you both in my arms and just hold you.
I stumbled here.
We can be your machine. The machine that you don’t have right now – the one that takes the shit and the sepsis and the sad and the dark and works on it, prays, dances, sprinkles it with holy water, cleans it and sends it back.
We can do that.
I will think of you. xo
I wish I had something inspirational for you to hold on to. Though there are many Bible verses that I find comforting, sometimes in the moment, they sound trite. To be honest, I think of “Steel Magnolias.” Cheesy, I know. But I imagine if it were me this was happening to, I’d feel exactly like Sally Fields, not like Darryl Hannah. So all I can say is though I know my tears don’t help you, I will be saying prayers for you, that God will help give you even more strength to get through this time, and provide you with loved ones to lean on. Don’t try to be brave and do it on your own. Your kids need you to use that support. Lots of love coming your way…
I am praying for you, and posted on my blog asking for prayers, also. I’m sending as much love and good thoughts your way as I can.
I do not know you, this is the first time I have read your blog. I am sending all the positive vibes I can muster. I am heartbroken trying to comprehend how you feel right now.
Oh my. I am speechless and praying for all of you.