Limbo

We continue to be in Limbo on putting all of the "puzzle pieces" together for what is best for Porter ~ "Today".  We came to Texas with the impression Porter would be having a Septal Myectomy but the drs here have said the obstruction isn't presenting as bad as it did at UNC.  We're a little puzzled about this as we came straight from Carolina to Texas ~ maybe the altitude on the flight allowed his blood to flow better???  We're feeling a little frustrated.  Happy that he may not need surgery right now but confused as to why the different measurements.  They are looking at his lungs as well and feel that if they can optimize his nutrition the lungs will improve.  My question to the drs today was what if we fix his heart~ shouldn't that help the lungs??  Answer~ well maybe but we're not sure.  ARGH!  Hopefully the next few weeks will give us more answers.

A mom came by yesterday with a bunch of nice toys for Porter.  She had a baby who passed a way a couple years ago and every year on the baby's birthday she brings goodie bags to the families in the CVICU.  SO nice.  OT played a lot with Porter today and got him a bag of plastic textured rings that attach to each other (like a chain) and they strung it across the bed. They hung some rings down from the main chain so he could grab on to it.  He was fascinated with it and did reach for the rings. They are talking about moving us to a step down unit which will allow me to stay in the room with Porter.  (There's a bed and a full bathroom.)  This could be good or bad..We'd save on paying for a place to stay but it might be noisy with the monitors and nurses coming in AND they would probably frown upon wine in the hospital room.....  hummmm.   :) 

Comments

  • crsmith77

    I came across Porter's website and story when searching for a local charity to support and I was truly touched by the strength both Porter, you and your husband have shown through out this experience. I'm really in admiration that you've been able to keep it together as you have and I send you guys my thoughts regularly. I'm so happy that your blog was pointed out to me by your coordinator so I can find out how he and you all are doing. My nephew has a condition called hypotonia (lack of muscle strength and control) so I know how wonderful Porter's reaching for the rings must have been. You guys are in my thoughts!

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