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So we have been out of ICU for some days and here is what progressed…

Lennon had no interest in food, so the docs wheened him of TPN and Lipids and today they stopped them completely, in hopes that he would start eating.

On Wednesday his sats dropped and an X-ray indicated that the right side is with fluid, and so a tap was done on thursday. In addition, an ultrasound indicated that his hepatic vein had narrowed again and that is probably the reason why his right side was with fluid.

This is the game plan, on Monday they are going to balloon it again, this time bigger than the last (stretch the vein) and possibly put a stint in it. This may require the breathing tube during the procedure, but my hope is that it is only for the procedure and not long term. If this works, which it should (cross yer finger and toes) and he does improve as he did the last time, we are heading to KCRC Rehabilitiation for physical therapy.

Of course I am worried tht this won’t go as good as everyone hopes and we return to the PICU, my hope is that it works and we are here for a few more days and outta here.

He did start eating a little, moving from potato chips to some peaches!!!

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Petra Monaco

Petra Monaco

Introverted Rebel, author, artist, teacher + coach, doer of things, and a mom to 3 boys – one with some extra needs that have forever changed my life. 

I love all things personal growth, music, art, food, words, and more importantly coffee.

Petra Monaco

Hey there, hi!

Welcome to my space on the interwebs! I love all things personal growth, music, art, food, words, and more importantly coffee. Hi, I’m Petra. Introverted Rebel, author, artist, teacher + coach, doer of things, and a mom to 3 boys – one with some extra needs that have forever changed my life. And this is our life! 

Grab a cup, get comfortable, and let’s get into some shenanigans, shall we?!

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3 Comments

  1. Steph

    We will be praying that everything goes at hoped and the procedure does not involve anymore setbacks and especially not another PICU stay. I hope that removing the TPN helps with the eating, although I imagine that all takes time as his little tummy hasn’t eaten for so long it’s all shrunk up and needs some stretching. Was he on TPN the whole time, or did they put an NG tube in to feed him through his gut? So many concerns yet but such great progress lately … can’t wait to read the post that he’s moving to rehabilitation 🙂

    Reply
  2. Julie

    Big steps for you all in the next few days…Keep moving forward bud! We’re all praying for yah. Stenting the hepatic vein sounds like a super plan! Thinking of yah and cant wait to hear how much they love Lennon at Kluge! Stay strong guys!!!

    Reply
  3. Kim Saxe

    I am glad he is making such great progress. I continue to be in complete awe of you as a mother. I wish him the best with the new procedure and a quick recovery through physical therapy. And, I agree with you, I bet he will make much faster progress than expected. You’ve got quite a little fellow there!

    Reply

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