I’ll just lay still and close the valve, that will teach you!

Today was one of those days that had both good and bad about it.  I wasn’t there for the majority of the day as I flew to Nampa last night for my grandfathers funeral today.  It was a nice service and it was good to see family I haven’t seen in a long time.  Anyway Stacy told me that Greyson was requiring a lot of oxygen today, up to 60 percent, and was having trouble keeping his stats up.  She also got to look at his chest x-rays (something I’ve asked to see, but always with the tag line “only if its no trouble”  how funny that it finally was no trouble when I wasn’t there!) and his 4am x-ray looked pretty good, while his 3pm one looked worse.  Greyson is still fighting off one of his infections that is a bit more resistant to the antibiotics.  He was coughing a lot today and they suctioned a lot of junk out of his lungs (this is positive as it means he was working it out).  So none of that was very positive. 

What was good, although it’s hard to see in the picture, is that Greyson got another echocardiogram today.  The technician had a tough time measuring his pulmonary pressure because I guess they measure this by seeing how much flow goes through a little valve that we all have.  Well Greyson’s just kept clamping shut and they couldn’t see anything.  The Dr. said it was great that Greyson’s valve worked so good, but bad cause they couldn’t get a reading.  Well they kept working at it and finally got a reading.  They said that he was less than 1/3 systemic.  Saywhatmic?  OK so on this blog we talk about pressures a lot (especially since he’s been back on the ventilator).  The ventilator pressure shows how much pressure it takes to give him a breath.  Pulmonary pressure measures how much pressure there is in his lungs verses his blood pressure in his body.  The pressure in your lungs is far less than your blood pressure (something like less than a quarter).  Anyway when Greyson was first admited to the PICU he was super systemic (the pressure in his lungs was actually higher than the rest of his body).  NOT GOOD!!!  Now he is less than 1/3 systemic which is good for a child with chronic lung disease.  YES!!  The other fantastic news is that Greyson’s heart has shown improvement.  You may recall his heart has enlarged due to the extra work it has had to do.  Stacy said the Dr basically said before he would have called Greyson’s condition moderate or more, but now would clasify it as strictly mild.  This is a huge relief as this is an area that needed to get turned around.  Thank you Lord!  They also raised his peep on his ventilator back up to 6 (a few days ago they lowered it to 4) and that seemed to be keeping his stats up for the rest of the day. 

So we stopped by the hospital and visited with Greyson before coming home.  He was wide awake and moving his arms around quite a bit (something he really hasn’t done much of lately).  He didn’t look fantastic, but really cute and not bad at all.  Hopefully the antibiotics can kick this infection so he can get even better.  As far as we know we are now 1 week away from the other surgeries, which hopefully will offer great improvments in how he feels and acts.  Thanks for everyone’s support and prayers, you all are a great encouragment to us!

Today’s song of the day was “Twinke twinkle little star”.  When I sang it Greyson got a very worried look.  Perhaps I was a bit off key???  Nahhhh  must have been gas.