Parker's Day

The big news of the day is that Parker came off the vent.  He's still on CPAP with pressure support but it's a step in the right direction.  He's also been tolerating his feeds really well and is less puffy.  He's still getting IV antibiotics, oxygen, steroids, breathing treatments, chest physiothearpy, and lots of medications through his g-tube.  We were hoping he could have a PICC (peripherally inserted central catheter) inserted so that we wouldn't have to worry about his peripheral IV that's in his hand.  Peripheral IV's don't tend to last very long and since he still has several days of IV antibiotics left we wanted a better route to deliver the meds.  AND if he had a PICC line, we could administer the IV meds at home once we were trained to do that and thus wouldn't have to stay in the hospital just for that.  Unfortunately, they were unable to place the PICC line which broke my heart because Parker went through a lot while they were trying.  They had to give him an anti-anxiety, a narcotic, and a sedating medication during the procedure because he was so upset about the whole thing.  I don't think any of them really kicked in until after they were done so he was kind of totally out of it all afternoon.

He started to perk up a bit this evening but he's still really tired.  I hate seeing my little guy this way but I am so happy at all the progress he has made and I'm hopeful we can wean him off the CPAP tomorrow. 

Both sets of grandparents and Alexa came to visit Parker tonight.  Parker was still pretty out of it but he did give Alexa a big smile when she sang Twinkle Twinkle Little Star and Baa Baa Black Sheep to him. Seeing that meant so much to me.  I've got the two best kids in the world I think. 


We found out tonight that there are two bugs involved in Parker's illness.  Both of which would be fairly easy for Parker to get because of his compromised status and his trach.  The main diagnosis so far is tracheitis and pneumonia.  They're just trying to decided if continuing the IV medications for 6-10 more days is necessary or not or if there is an alternative.  It's a tough call to make because leaving him on these high power medications if he really doesn't need them can have unpleasant outcomes but not leaving him on long enough could cause the illness to get worse or cause other problems.  So...we're leaving that up to the Doctor's to decide. 

So for now we're just playing the wait and see game and trying not to go to crazy in the meantime.  Thanks for the prayers and hopefully I'll be writing my next post from home.