6/2/11 Update

We got a call at 8am that overnight Preston had gotten worse, he was now on 100% oxygen on the vent and some of the things we had talked about with the dr were happening...like the vessels in his lungs tightening making it harder for the oxygenated blood to get in.  They were going to be running a bunch of tests and doing some procedures soon so we got ready and went to see him.  When we got to there we spoke with the dr and it wasn't good.  He told us that they were starting nitrous oxide to hopefully open up the vessels in his lungs but that if it didn't work Preston would most likely need transferred again and possibly even put on ECMO.  Which is like a lung/heart bypass machine.  It would take all of the blood out of his body, oxygenate it and pump it back in...doing all the work for his heart and lungs to give his body a chance to heal.  But that it was very aggressive and very serious.  The dr didn't sound all that hopeful and had us very scared.  The dr is wonderful and was really trying to be comforting but the reality with Preston was very serious and scary.

They did an ultrasound on his brain and thankfully he has no bleeding on the brain.  They also did and echocardiogram on his heart and saw that it was formed correctly but the right side was showing some pressure because of having to work so hard to pump blood to his lungs.  They had started the nitrous and the first blood gas showed it was working but then the 2nd showed it was bad again.  As of today the cultures done to see if he had any infections hadn't shown any growth but it hasn't been long enough to know for sure that it won't so we are still waiting on final results for that.  They had to put in a PICC line to stop from having to poke him so much, luckily they got it in on the first try. He also had an IV put into his head because he needed blood pressure medication because his is too low and it has to go in on it's own not with anything else in his IV so they needed a 2nd line for that.  His blood counts have looked good, so we hope that they continue to but just in case we had to sign consents to allow a blood transfusion if it ends up being needed and we aren't there to sign.

We should see in the next 3-5 days if the meds for his lungs are helping and if they are he should start to show improvement during that time.  But it's still very touch and go, he could go downhill at any time and need to be transferred so we are praying those meds start working very soon and he turns a corner and starts doing better.  Not sure we can handle more news like we got today.

While I was there though I got to take his temp for his nurse..it was 99.6 under his arm :)  The nurse offered to let me try to change his diaper but I was too scared with everything going to him that I just watched her.  He is much more sedated today so he looked more peaceful but he's still working very hard to breathe, his poor chest looks like it must be sore from working so hard.  Plus he got hiccups which made it look even worse :(

Casen asked me this afternoon if our baby was going to die because Landon had told him that sometimes babies do.  It was so sad :(  They really don't understand why this is going on, none of us do.  I wish there was something we could do to make him magically better.

Pics from today