Saturday, May 22, 2010

Still chugging along

Bodie is still steadily improving, thank God! They're hoping to extubate him tomorrow - and probably start weaning his sedation a bit (they like to keep them pretty doped up while they're still intubated as it's fairly uncomfy for them). Please pray specifically that he is extubated tomorrow and that he continues to improve dramatically!

We plan to have another conference with the doctors on Bodie's condition early next week - please pray that the doctors decide (as I suspect) that Bodie is not in fact that fragile, but instead ended up in the state he was in because he wasn't managed properly on the step-down unit (which is a whole other matter I intend to discuss with them during that conference as well - Bodie should NEVER have been allowed to deteriorate to the point that he did; in fact, the only reason he ended up in the CTICU when he did is because I called the Rapid Response Team (a "2nd opinion" emergency team that parents can call if they believe their child is in critical condition or simply isn't been treated effectively)). I would guess that any child (even a heart healthy one) with symptomatic c-diff that was untreated for a week would probably not be in great shape. So, we are thinking Bodie's condition had more to do with that than any fragility inherent in him. Please pray that the doctors agree! That would mean he could go home rather than staying until his second surgery!

Oh, and a few updates on the kiddos you've all been praying for:
1. Jacob - he's home now!!! And doing wonderfully. Please continue to pray for his family as they settle into life with a high-risk child.
2. Adelaide - she's doing SO much better! She just had another open-heart surgery Monday to repair her mitral valve, and it was a roaring success! She is now off of all her heart meds and continues to make steady progress recovering! What an answer to prayer!!! Please continue to pray for her recovery. (Oh, and you remember the infection I posted about sometime ago? The one that caused her to have to go back on all of her heart meds? Yep, that was c-diff, too. Nasty stuff.)

Thank you so much for your continued prayers!!!


  1. So happy to read of his steady recovery! So thankful for the motherly instincts God has given you! Twice now you have saved him. Amy, you're the perfect mother for Bodie. We pray for all of you daily. Wonderful to hear the news of Bodie's friends too. We will continue trusting in the Lord and praying for His perfect will for yout family. We love you so much! Love, Erin

  2. My dear Amy. I have already been praying that Bodie gets extubated and gets to come home before his surgery. I am so excited to see that this is the plan anyway (the extubation) ! Praise God! Of course we will continue our prayers for Bodie and we will continue to believe for miraculous healing. I am so happy to hear about his friends too. Hunter has especially been praying for Addie! :O) We are sending you our love and continued prayers. Biiig hugs for my Bodie. God bless You. Much Love, Nairi

  3. Amy,
    My name is Courtney and my son also has HLHS. He turned 2 in march! He currently has had his glenn and is awaiting his fontan. Right now he is to small to have it. He had a run around with ear infections at the beginning of this year. All the antibiotics lead to Cdiff last month. It is a nasty nasty bug. He made his scream in pain, refuse to eat, vomit, have blood in his stool, breathe heavier and his sats even dropped a little. It has been almost 2 years now since his glenn so he is normally a very very stable kid but the Cdiff did a number on him. Once he started the flagyl that helped with the Cdiff..but that can also make them sick to there stomach. The flagyl itself made him vomit and lethargic if it was given on an empty stomach. I just wanted to let you know a similar experience. If it was so hard on him as a glenn I can't imagine what he would have been like as a norwood getting it. We are praying for Bodie every day. I bet once he gets rid of the Cdiff and eating again...he will gain his strength back and get home. Love to your whole family
    Courtney Long
    P.S. You can email me anytime if you want!!!

    Cody also aspirated thin liquids after his norwood..came home on nectar thick breast milk and just passed his swallow study 2 months ago. He is finally able to drink thin liquids again!!!!!

  4. YAY! This is such great news! I am so happy to hear your little guy is making some great improvements and will pray specifically that he loses the breathing tube tomorrow. I'm so glad that God has had His hand on Bodie and I look forward to hearing the most greatest news ever following your conference with the doctors! And yes! yes! yes! be sure to tell them EXACTLY how you feel about how things were handled, what was done wrong, etc. so they can LEARN from it so no other child or family has to experience that.

    Heart hugs!