Skip to content

A Lot Like Yesterday: July 24, 2012

July 25, 2012

Today was a lot like yesterday, but no one was panicking because they knew what was wrong. Oliver’s chyle had built up again in his chest, and was once again crushing him from the inside. They decided to put a drain tube in his chest because the chyle will continue to accumulate and it is safer for it to be continuously drained. It is a potential source of infection, especially because of the gortex patch that is his diaphragm, but an infection is better than chyle compressing his poor lung.

His PICC line has been causing clots in his jugular, which can be the cause of chyle, so they had to re-locate it to his groin. He is now being treated by the thrombosis team for his clots, with blood thinners (heparin) and head ultrasounds to watch for brain bleeds. Blood thinners after surgery aren’t ideal, but Dr Langer said 4 days out should hopefully be fine.

His nurse Bev and I were joking today that Oliver thinks he’s at an all-inclusive resort and he just wants to try one of everything before he leaves. Which is a fun way of saying this poor kid just can’t catch a break. Anything that can go wrong for Oliver seems to go wrong. The hopeful thing is that he has managed to fight through all of them so far. In 24 hours his body has tried to crush his lung to death TWICE and he managed to hold his own through it. The antibiotics seem to be working as his fever hasn’t reared its ugly head today. And every time those nasty muscle relaxers start to wear off he opens those big blue eyes up and shines a light right in to my soul. My little fighter isn’t ready to give up and I love him for that. These complications are emotionally difficult to get through. But I remind myself that every single complication is a complication caused by trying to keep Oliver alive, which wasn’t nature’s plan. So even though they’re challenging, I’m still grateful for them. Xo

20120724-210815.jpg
Showing off his latest stylish accessory, the drainage tube

20120724-210858.jpg
Looking a bit tired of all the poking

20120724-210932.jpg
My little love

Advertisements

From → Uncategorized

12 Comments
  1. Sarah permalink

    His lips are so kissable.
    Thinking of Oliver multiple times a day! xo

  2. Susan Wesson permalink

    Oliver has already demonstrated an enormous capacity to survive despite everything he has come up against. This little guy has a tremendous spirit. I admire him so much, snd I admire you and Tim even more. Sending lots of love your way.

  3. What a good fighter the sweet little boy.Hopefully he can catch a break soon and start getting better.

  4. Kate permalink

    It’s funny, with all the abnormal things in that picture, all I can focus on is the normalcy of those tiny little pampers and sophie le giraffe. I hope tomorrow is a better day.

  5. Mom of two permalink

    Dear Alex, a friend of mine liked your status update after the surgery and it led me here to your blog. I was so mesmerized by your beautiful little boy that I read your blog from the beginning. Even though I don’t know you, it’s easy to see what a wonderful person and mother you are and how positive and strong you’ve been through everything. Your little Oliver is such a fighter and a pretty amazing little baby that God will surely help him fight this so your beautiful family can soon be together. Sending you and your family and especially that gorgeous little boy soooo many positive vibes and prayers. Continue to stay strong, you trully are an inspiration to mothers everywhere.
    Jo

  6. Jayme L permalink

    Alex, it official I’m in love with your little man he has stolen a piece of my heart. Blessings to you and your family! Always good thoughts to you all.xoxo

  7. Touched by your story permalink

    From a stranger out there in FB world: may G-d bless Oliver and your entire family with strength and courage. I will pray for all of you every day until Oliver is discharged home.

  8. Kate permalink

    You know, I was listening to this song this evening and it made me think of you guys.. I wish we could all give you shelter from the storm. http://youtu.be/f8TayMIEUaM

  9. Julie Wajcman permalink

    Sending so much love to you all! You are so strong and so is your little man. Yay, Ollie! Keep pushing through xo

  10. Theresa permalink

    Another FB stranger and mother of a 29 year old CDH son who was given a 1-3% chance of survival…..Continue to keep a hand on him (touch is critical), and fight like hell with him and FOR him…..he knows what you are doing!!!!!! I hope you too will watch him snowboard and sky dive…..I can appreciate everything you are going through! Stay strong…he needs you.

  11. Robyn permalink

    I came across your blog through a friend on Facebook. I know we do not know each other but i feel i have gotten to know you and your family through your blog posts. I think about you and Oliver on a daily basis, i send positive thoughts and prayers out to the universe and share your story with others so they can do the same. I cannot begin to imagine how hard this must be for you and your family and i really really admire your strength and positive outlook during this tough time in your life. I am a new mom myself, my son is just over two months and not a day goes by that i don’t count my blessings. Your story has truly inspired me! Your little guy is so lucky to have you for his mom!
    Sending you, your family and Oliver lots of love! I will look forward to the day when i read your post about you bringing Oliver home!

    From my family to yours ….Lots of love and good vibes.

    p.s Music has always helped me get through tough times so here is a song i think you may enjoy!

  12. Lisa permalink

    Just another stranger in this Facebook world praying for your little man and hoping that with you blogging, you know there are people out there praying for Oliver and your family.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: