Monday, June 4, 2012

Tummy Time!!!

Sorry for the skipping of posts-- I had Storytime Shift two nights in a row, which is tiring but worth it!!

The P-nut continues to do pretty well post-surgery. His heart rate is higher than it has been, and he is having off-and-on poor blood perfusion to his hands and feet. These things could just be related to the body's response to the trauma of surgery, or there might be some infection. We are waiting on some culture results to hopefully rule that out (the initial results at 24 hours were negative, but they will watch it for 5 days).

From a respiratory standpoint, he is improving greatly.  Today he was down to 28% oxygen (room air is 21%) with a rate of 35 breaths per minute.  By all accounts, he continues to have good looking chest x-rays, with some fluid accumulation in the left lung area... That's to be expected, now that there is a big gaping space where stomach and intestine used to be.  I will try to get a picture of the new and improved x-ray tomorrow!  There's not so much fluid that they need to draw any off, and the hope is that as time goes by, that extra fluid will reabsorb and the left lung will fill in.  Patience patience patience.

Other than that, we just continue to see how he progresses.  Test test test. Wait wait wait. This is our new routine!! Our goals for this week (we Knolls love our goals) are to wean down the ventilator (while maintaining good blood gasses) and to come off the morphine drip. The doctors are ready to wake him up a bit, and I am excited for that. I just hope his discomfort is not too great in the process. We also hope to start seeing the gunk getting sucked from him tummy turning from green to clear (gross, I know. Apologies)

Once he gets rid of some medicines and has clear stomach gunk, we will be ready to start feeds through a tube.  Oral feeds will come much later, after we see how his digestive system responds and after he is able to breathe on his own.  Still, I am excited for the next step-- it might happen as early as next week, if the medicines can be weaned down this week.

The pulmonary hypertension continues to loom in the background.  His echo from Friday didn't show too much change in an either positive or negative way.  We are hopeful that as this week passes, we will have news that his hypertension is on the way out!  Speaking of out, he might be getting rid of his foley catheter soon.  Please, join hands and dance around the campfires that we can finally put the nether-region drama to rest!!!

That's about all the news I have.  His nurses have been repositioning him a lot over the weekend, and he is tolerating it extremely well. I know he must feel better to be off his back and to have his neck turning in all directions.  He spent most of yesterday and today on his belly, snuggled up with Mickey Mouse and happy as a clam.  I was happy to see his back for the first time!!

I shall leave you with a quadruple dose of cute--

Parker on his belly

Parker's little diaper fanny (I am a sucker for diaper fannies)

A totally open mouthed drooly happy sleepy Parker (so dark!  Yikes!)

And my sweet and precious Jeremiah, in his pajamas and singing his good night song for Parker-- with the sign language (sort of).  I played it for him during Storytime Shift, and it just melts my heart!


  1. Aw! What a cutie patootie - both your boys! Many prayers for more progress and weaning and no infection! It sounds like everything is going great!
    Mom to Dakota 12-25-2008
    RCDH survivor

  2. Couldn't think of a sweeter song to start the day. Jeremiah just could be a future AMERICAN IDOL winner :)...already one to his little brother! May they always share a special bond. Hurry home, Parker!

  3. I am a sucker for diaper fannies too. Love Jeremiahs song. Glad to see things are going well. You will continue to be in my thoughts and prayers.

  4. All I can say is precious!! Love and Prayers as always from Kershaw, SC!!

    Shay Connell

  5. GREAT UPDATE!!! I will continue to pray! Your boys are precious!!!
    Shauna Spear (Graduated from Loganville High School the year after Chris Davis)