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Thursday, November 11, 2010

Glenn update #3

In some ways it feels like we've never left the PSHU, we just moved rooms...a lot of memories of the month long stay we had during the Noorwood.  But we were so glad they had a room for Jonah on the PSHU instead of the PICU, and it was especially nice to see all of Jonah's nurses that took care of him before.  These nurses are absolutely the best, and we love seeing each of them stop by to say hi and see how Jonah's doing.

He's extubated, on oxygen, pain meds, got the central and peripheral IVs, pulse ox, one chest tube, and a urinary catheter...I think that's it but Stacie would have to tell you about all the other medicines and things they are doing.  His blood pressure has been really high.  It was in the mid 130's for a while...the nurse said they would like to see it at 80...seems pretty darn high to me, so they are giving him some blood pressure meds and lasix to help him pee out the excess fluids.  He's woken up a couple times pretty pissed off, thus they're using some sedatives to keep him relaxed.  Much of his irritability is likely the result of all this new pressure and what they call "Glenn Head" or Glenn headaches.  He's swollen, but not as swollen as post-Norwood.  There's is a distinct 'line' around his torso where you can see the difference in blood flow (his upper half is a lot more pink than his lower half)...they tell us this will subside as his body recalibrates to the Glenn and the new blood flow.

So what exactly was done with the Glenn?

This surgery basically diverted all the blood coming back from Jonah's upper body through the Superior Vena Cava (the major vein coming from the upper body) connecting directly to blood vessels to the lungs (pulmonary arteries). Blood with more oxygen is pumped to the aorta to supply oxygen to the body's organs and tissues. This reduces the work of the lower-right heart chamber (right ventricle) since it doesn't have to pump all the upper body's blood to the lungs and can focus more on pumping oxygenated blood to the body. 

We got a room at the Ronald McDonald house!  It's only 2 years old and is surprisingly luxurious.  They have volunteers make dinner each night and there's a large community kitchen for making meals.   Other ammenities: TV rooms, library, game room, kids play room, wi-fi, laundry, and Sleep Number beds.  It really has the feel of a top-notch resort...another heart parent reminded us "It's the best place you don't want to be".  This will save us hours each day commuting back and forth from home, allowing us more time to help Jonah recover.

Before I log-off, I just want to thank everyone for all the kind posts, texts, emails, and phone calls.  It means so much  to us to have all your support and prayers.  Thank you!


  1. I'm so glad things are going so well. Keeping Jonah in our thoughts and prayers for a speedy recovery! :)

  2. I am so happy everything is going so well. Glenn head is rough, but he won't even remember it. I hope you have a short and happy stay at the Ronald McDonald House!

  3. YAY, YAY, YAY! So glad things went so well! Praise God! Just to warn you, for a lot of these kids (mine included), Glenn head gets worse before it gets better. For Bodie, post-op day 2 was far and away the worst, but then it was like he turned a corner and there was literally a night and day difference from day 2 to day 3! So if that happens with Jonah, just hang in there - it will get better!!!

  4. So thrilled for you guys that Jonah's in the PSHU and you're able to stay at the RMCH. Hopefully you can try to catch up on a little bit of sleep while the little man recovers!
    Olivia, Lisa & Brian

  5. Praise God! It sounds like Jonah's doing so great post-surgery! What an answer to prayer! I agree with Amy... day 2 was a bit tough for Chase, too, but after that it was a quick recovery. You and Jonah continue to be in my thoughts and prayers!

    Heart hugs!

  6. Jonah is such a tough little guy! We were really happy to hear he went through the surgery so well.We will continue to pray that the rest of his recovery goes just as quickly. RMCH sounds like the perfect place for you guys to get some much needed rest. Hoping, though, that it is a very short stay and your home soon.
    Love and hugs to all of you!
    Aunt Patty and Uncle Jim

  7. Glad to hear the Glenn went as planned. Amy is right, the headaches get worse before they get better. Zoe's post op day 3 was her worst. Hang in there, he will be new and improved very soon. You'll all be home and happy before you know it. Thanks for the updates!