Thursday, July 14, 2011

And it continues...

Today, we ventured downtown to the hospital for a transplant nursing visit to keep eyes on the bruised/bleeding port, a PICC line dressing change, and a play therapy appointment.  The port looks about the same, perhaps somewhat better, than yesterday.  It's the strangest thing, and no one truly knows what to make of it.  Obviously, we won't be able to use it for awhile.  The good news is it doesn't appear to be getting worse quickly, so we think it will resolve in time.  Everyone keeps blaming all this bleeding/bruising on the steroids.  Perhaps they are right.  What do I know?  We checked his platelet and coagulation levels yesterday, and they were all on the low end of normal.  That is very hard for me to make sense of or believe when his port looks like it's about to explode out of his chest, he has an 8 week old mystery wound on the other side of his chest, and his legs are each one completely solid bruise.

The PICC dressing change did not go well.  At all.  Keegan's line is now about half and inch out of placement.  It literally seemed to jump out of his arm the minute we took the dressing off.  I don't have the energy to relive how it all went down, but I feel we very, very, very narrowly escaped ending back up in Interventional Radiology to get this line pulled/replaced or fixed.  It is taped down about 15 ways from Sunday right now.  I will be extremely surprised if this line makes it through the week.  Max.

To make things more complicated and tense, Keegan did not urinate from 4pm to 6am this morning.  Despite tube feeds and TPN running all night long and drinking several cups of water in the evening.  I did not measure his diapers today, but I do not feel like he made up for that decline during the day.  I pray that I'm wrong.  Fingers and toes crossed for lots of wet diapers tonight.

Time for bed after TPN is hung for the night.  Praying the AC hangs on, that my children stay asleep, and that tomorrow is better on any degree.  I'm going to bed with a very heavy heart.  We are not happy with almost all (save a few individuals) of Keegan's medical team at the moment.  The finger-pointing and unwillingness to take responsibility for Keegan's care is getting slightly ridiculous.  I will admit that, two years from the last time it became an issue, tonight Gray and I had to discuss what our other options are outside of Children's.  There aren't many, and right now, that's only adding to our stress levels.  We would greatly appreciate your prayers for Keegan's stability and our ability to advocate for him through these trials.  Thank you so very much.  Hopefully we will have some more positive updates for this blog over the weekend!

p.s. Audrey is making lots of progress!  Yippee!! Bedtime and naptime are getting easier, and she started cruising on furniture today!  Delayed but making it happen.  It's mind over matter at this point.  Way to go, little girl!  We love you!

1 comment:

Sheree Field said...

Stanton and I ate lunch with C.M. and Frances yesterday. They gave us a little update about Keegan. We are praying for the four of you.
Stan & Sheree Field