Monday, March 1, 2010

Slow but steady progress

Bodie had another good day today - his catheters came out (a big relief to me since I know they can't possibly have been comfortable for him - even if it means I have to change diapers now!) and the nurse moved the ng tube from his mouth to his nose - he seem so much happier now!

His oxygen sats are still low (68-72ish and they need him to be 75-85, which would send me to the ER, but is normal for heart kiddos). It has been stumping the cardiologists - everything else seems to be doing well, but his sats just won't come up to where they'd like. And until his sats are holding steady between 75 and 85, they won't extubate him. So, they're going to try a few new things - (1) an echo to take a look at his shunt to make sure it's not restricted in any way (that's scheduled for tomorrow morning), and (2) putting him back on an external pacemaker at a slightly higher heartrate (he has been in a good sinus rythym since last night, right at 115-120, so they paced him at 130, with the thought that maybe making his heart work a bit harder will get more oxygen to his body). The good news is that since they started pacing him, his sats have held steady in the mid 70's! YAY!!! We're trying not to get our hopes up, but it sure would be great if this could be the thing that gets us off the vent! Please pray that it does...
In other good news, they've started Pedialite through his NG tube, so our boy won't be so starving anymore!!! If that goes well, then they'll finally start giving him my pumped breastmilk through the tube! And, I got more cuddle time with him today...


  1. Hello, your son is Adorable! I have a 17 month old daughter with HLHS and I got your blog from an email you posted to the Hope for HLHS group (just in case you were wondering!). I just wanted to say that being on the vent should not stop you from being able to hold your son. I understand every hospital is different but your holding him should not affect him from any medical standpoint. Most babies actually sat better when mom is holding them. Worst case scenario, he'll just get agitated about being moved around. I would talk to the head doc in charge and tell them you'll be extra careful of the vent and his lines. My daughter was 5 days old the first time I held her and the wait was torture. My lower legs and ankles were about ready to explode with all the edema from standing so many hours (sorry for the graphic detail but be sure to take care of yourself). Well, I'll be praying that you are able to hold your little one very,very soon!

  2. I like the previous note, it would be so nice, for you and him, if you could hold him. I'll be praying extra hard that they will let you. Thank you sooooo much for all your posts, I'm so sad I can't be around, this makes me feel connected. You're so good about it too! Thank you! Stay strong! We're praying! Love, Erin

  3. He is a fighter! And I am praying for him many times a day. I look forward to his next miracle. He is just so beautiful!

  4. That pic bring happy tears to my eyes! Sounds like he is slowly getting better :) What a strong mommy being able to pump through this, you are doing all you can to give him the best start in life! How is in incision healing up? Did they use the stitches under the skin and glue for the top? I hope so :)

    These heart babies really do have a mind of their own. I remember cheering when LJ's stats hit the low 80's ! Just as encouragement, we left the hospital when they were mid 80's and at his two week follow up he his 100%! I am sure Bodie will also suprise you! I cannot wait until they pull out the tube, I can't imagine going so long without being able to hold him!

    Becareful of the diaper changing....those boys aim for their mommy's face :)

    Prayers are still flowing and THANK YOU SO MUCH FOR THE PIC :)

  5. Hugs of love and continual prayers. How He loves to hear the name of Bodie!

  6. What a precious photo of you two together! Still praying here too!