Tuesday, March 15, 2011

More Questions Than Answers

I don't even know what to write right now. So much has happened, is happening and no one agrees to what it means or how to fix it or if it even needs to be fixed. For someone who likes answers and to stick with one track, this is absolute torture. Add the fact that all of this revolves around my son's life and I may seriously go insane. Below is a very bare bones account of the last week. I can't bring myself to type out all of the details.

We've continued to fight to get Linus's fluids in the right range. He has the teeniest of windows between dehydrated and overhydrated. Now he's started having wacky situations where his body and veins are dehydrated and his heart and lungs stay congested with too much fluid. How do you even begin to treat this??

After his echo on Wed showed some "slight improvement" it was decided that he was stable enough to be treated on the cardiac floor instead of in the ICU. He was there for a day and a half before things went awry. He was really fussy so Trina had them come give him Tylenol thinking it may be pain. He started screaming and wouldn't stop. Tria buzzed for a nurse, but no one came. Then Linus stopped moving and turned blue. Trina ran into the hall and yelled for help. His heart rate was in the 70's and his O2 sats were in the 80's. They gave him oxygen and he came around. They decided it was a "vagal response." The charge nurse called upstairs to the ICU to let them know what happened and they said they'd come get him. Ten minutes later he was back in the ICU.

Soon after he got there, he had another episode that mirrored the first. They stabilized him again and started a blood transfusion after determining he was anemic. Linus started going downhill a third time, but didn't stop. He was crashing. His heart rate reached the 30's and I'm not sure how far hit sats plummeted. They called codes, grabbed the crash cart and started CPR. Trina, there alone, was kicked out. She was hysterical when she called me. I was on my way, but still 45min out. I couldn't believe this was happening. I got to the hospital before anyone had updated Trina. It ended up being an hour and a half before we were told he was stabile and we could see him. He was under an air filled heating blanket, on a ventilator and hooked up to more tubes and wires than ever before.

Since then he's had several more of these episodes, but being on the ventilator and hooked up to meds keeping his heart rate up, they haven't been able to progress as far as that big one. Everyone has a different opinion on how his case needs to be handled and no one seems to agree. It's maddening. According to today's echo, Linus is worse off now than he's ever been and it seems that no one has a clue why. I'm hanging onto my sanity by a thread.

Right before his transfer out of ICU.
Looking pitiful in his new room.
Looking out the window is almost as fun as watching TV.
Back in the ICU after he crashed.
Geting his 4th blood transfusion in 2 days.
Looking peaceful.

62 comments:

N said...

I wish I had more words than I'm sorry you're going through this, but I don't even know what to say. :( Much love and strength to all of you. <3

Kirsten said...

Thoughts and prayers coming your way.

lesboparentstobe said...

Oh Robbie, sorry doesn't even begin to say it. I've been thinking about all of you so much and will continue to hold you all in my heart.

Samantha said...

Praying for all of you.

Anonymous said...

sending prayers.

A :) said...

My thoughts are with all of you.

Bionic Baby Mama said...

that sounds like torture for anyone. i am so sorry. i hope things improve soon.

Beth said...

We're so sorry for poor little Linus and the rest of you. We'll say prayers for you all!

AdventuresInBabyMaking said...

I can't begin to imagine how scared you guys must have been.

Any chance at all that he has thalassemia? It seems like a longshot, but my partner has alpha thalassemia, occasionally has vegal responses, and her doctors always thought she was anemic when she was a kid. It was until we started ttc that she was tested for it, and it all made sense. There are beta blockers that can help.

(FYI: she's perfectly health in every way and it doesn't affect her life at all, so it doesn't have to cause any problems, if indeed it's the case)

Sending all the best to your family.

Anonymous said...

You and your family are in our thoughts and prayers.

Raine

Finch and Wren said...

Keeping you in our thoughts and prayers. I can't even imagine how frustrated and helpless you must feel with the conflicting opinions. Sending you strength during this difficult time.

Schroedinger said...

My heart is breaking for all of you. I am sending all my strength & hope.

Christine said...

You are in our thoughts and prayers, I'm so sorry you are going through this terrifying and exhausting experience.

H2 said...

Hope and I are thinking of you all. So thankful that he made it through the code. Hugs mama. Stay strong, Linus!

Misty said...

My heart aches for your little family. I feel your frustration being in the health care field im very aware how difficult this time can be. Were all here for you

ModaresiBeal said...

I'm new to your blog and found it through the New American Family blog. I find your and Trina's situation so tragic and compelling that I sat one night and read your entire blog. Seriously. Since the beginning.
I think your boys are beautiful and especially love Linus' sweet face despite all the tubes and machines around him. I have a baby boy just a few months older than yours and also a little boy that will be 3 in May. I can't imagine going through this with either of them. I would collapse with the emotion of it.
I think you guys are doing a wonderful job trying to balance everything. I'm so sorry things are so unstable. I have a friend with a CHF baby and it's such a roller coaster.
I'm not a praying type of person, but I deeply and truly wish that Linus' health improves and the doctors can figure how what to do to fix your sweet baby. Good luck and I will keep reading your story with much admiration for you two strong women.
-Shirin

Edward said...

Be kind to one another and keep faith that your little man's path will become clear very soon. We're praying for you all.

Carey said...

We are praying for you and your beautiful boys. Linus is such a little fighter!

CoffeeBlue said...

Sending so much hope and strength and peace to all of you.

tbean said...

These updates are heartbreaking to read, I cannot imagine how they feel to live through them. Thinking of you often and praying hard for Linus's recovery.

Allison said...

I cannot begin to imagine how you must feel. Best wishes to you all. I hope you get some of the answers you are hoping for soon.

Kimberly said...

Sending lots and LOTS of prayers your way!

For the Long Haul said...

I don't believe I have ever commented before but feel as though I need to tell you I am here, and I am reading along with your story and doing my very best to send both you and Trina some love and support. I can't even imagine how very hard this is for both of you and wish you could just be at home with all three of your precious boys; healthy and happy. Hopefully that time will come sooner rather than later. Hang in there.

curlyjyl1201 said...

Im also a mother, I know how painful to see our own child suffer in this situation, the more painful thing is we cant do anything to ease the pain of our own child. But one thing for sure , only prayer could ease the pain in your heart.. My prayer for you and your baby.

Next in Line said...

Hugs, love and hope for your family.

Libberal said...

I can't find the words to tell you how sorry I am that your family is going through this. Sending you all the courage and bravery to get through this time.

Shelby said...

Thinking of and praying for Linus and your family during this most difficult time.

zunzunbobo said...

sending good thoughts to all of you.

m.matschke said...

Thinking warm healing thoughts... Reiki as an option? Squeeze that lil Linus till he is all better;)

A+K said...

What a rollercoaster....so sorry to hear of the speedbumps Linus has been facing :( Sending big hugs a healthy vibes to your family...

Caroline said...

I am so sorry to hear this. I will continue to keep Linus and your entire family in my prayers.

-C- said...

How utterly, utterly horrible. I don't blame you for being close to losing it. I say lose it -- yell, scream, cry. It could only help at this point. I am so sorry to see you guys go through this. We are all rooting for Linus and hoping this is just the dark before the dawn.

Laurel said...

My heart hurts for all of you. Be strong, sweet little boy. Sending many positive thoughts and hope your way.

Stacey said...

so scary and not something anyone should go through--baby or parent...thinking of you, sending lots of prayers. thanks for updating everyone--we always wonder how he's doing.

K J and the kids said...

I'm just sick for you guys. Sick.
I wish that there was some bright light knowing that there were answers ahead to look forward to.
Thinking and praying for you guys ! Stay strong little Linus.

mama bea, bao in the oven said...

Please know we're thinking of you over here. I can't imagine how scary things have been for all of you. Stay strong, little man. xoxo

Ashley said...

I really don't know what to say. I read this last night and I am continuing to think about you guys. This is all so very sad and I can't even imagine the pain you are feeling. I'm so very sorry, Robbie =(

JB said...

I am so sorry. Sending healing thoughts to sweet Linus.

Chris said...

I send hope and hugs your way...

"The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse."
Helen Keller

Anonymous said...

You as always, everyday are in my positive healing thoughts and prayers. Give all your boys my cyber hugs..extra to Linus, he is a brave little boy. Oh, the stories he will have to tell his kids one day. Leslie

Jen and Kara said...

Hi ladies,
My partner and I have been following your story for awhile now. We just want you to know that we think you are both very strong and courageous women. We are thinking about you and your family. Take Care!
Kara and Jen

Anonymous said...

My friends created an event called "A day of prayer for Linus" on Facebook.

I have no words except here is the link.

http://www.facebook.com/#!/event.php?eid=153227271404147

Heather said...

I'm so sorry. I wish I had more words, but I don't and just wanted you to know that I'm out here hoping for the best.

Kara said...

Cannot in a million years imagine what you two are going through. I'm praying for your family like mad...

Meredith said...

Prayers for Linus and your broader family.

Heather said...

<3 <3

reproducinggenius said...

We are sending our love, strength, prayers, and all the healing energy we can muster your way. Come on, little Linus. Keep fighting, sweet boy.

Heidi said...

I had chills the whole time I was reading this. I can not imagine what you and your family are going through. I just hope things get better for all of you soon.

vee said...

I'm not a regular reader, but came here via Thinking Miracles. So terrifying. I hope your little Linus stays strong and recovers soon.

tireegal68 said...

Our babies are the same age - we were on the BBC boards at the same time. Linus is such a fighter and has such a bright spirit which shines through the pictures and your words. I'm hoping so hard that he can be healed and lead as normal a life as he can do and have lots of little boy and baby fun. I'm praying for strength for all of you. Big hugs and lots of hope too. Xxooxxoo

Shera said...

Have been following your blog since I first saw it on the BBC boards. Will be sending our thoughts and prayers to your family during this difficult time.

Anonymous said...

Oh, my heart is just aching right now for your family. We have never met, yet you, your wife, and your little ones have been in my thoughts and prayers many times...I will continue to keep praying that this all turns out positive and little Linus gets healthy soon.

Wendy

jade said...

Hugs for all of you. Jade

Pomegranate said...

Oh, your sweet baby boy...

Sending love and prayers.

lezbemoms said...

Hi, I followed the link over from Defining Family... so sorry to hear about all the horrible things happening! I'll keep you guys in my thoughts, and look forward to seeing a post that says "everything is better!" :)

Shannon said...

I'm so sorry to hear about what you're all going through. I can't even imagine. Thinking of you often.

Cynthia said...

I was asked to pray for Linus through a Facebook friend. I, of course said yes but wanted to know more. I have been reading your blog and coming up to speed on your story and WOW has it been a complicated one. You are all so inspirational. I am so sorry life has thrown so many curves your way. My thoughts and prayers are with all of you. I hope you will be filled with the strength and love that is pouring in to your family through all of us and that little Linus pulls through all of this like a champ. One day I know this will all be a distant memory as you watch your 3 boys play in the backyard. Much love and prayers to you all.

Crazy Lesbian Mom said...

Thinking about you and praying for you. Much love to all of you...

allie :^) said...

just want to add my sentiments and sympathies to these heartfelt comments! :) it is agonizing when doctors don't agree, when nothing seems to be helping, when the person you love is not getting "fixed." we just hope for a miraculous turn around soon. and i can go there with you on the sanity part. ;O

Heather said...

Prayers for Linus and you and Trina.

ZombieKitty said...

I am so sorry for what you are going through... I will pray for your son...(hugs)

pugmama said...

I pray that Linus recovers from his surgery. The poor boy. I'm sorry you are going through this. I wish you and the other babies all the best during this rough time.