Day 17: Another Rock and Roll Day

Forget Rock and Roll... I want Lawrence Welk:  what I consider a nice, somewhat dull day.

It has to come at some point-- but clearly not today.

Things started out great.  My friend Angie (who has an 11 year old son with Down syndrome)

came up last night at 9:30p.m. and sent me home for a good night's sleep in my own bed.

Can I tell you how quiet it was?  It was heaven -- other than the fact I woke up twice believing I was hearing

alarm bells going off.  I guess you can take the girl out of the hospital but not the hospital

out of the girl.

Kean had a great night and was happy when I got there this morning. Unfortunately, that

was short lived. The site where his central line IV goes in was all bloody.

The doctors suspect he has the beginnings of an infection... so guess what? He is

now on another antibiotic.

Plus we got to traipse down to X-ray not once, but twice, only to find out that one of his two lines was leaking.

That is a huge deal for a kid under Chemo because the Chemo he was scheduled to get today (got it later) will kill

tissue if it leaks out of the vein.

After many doctor and specialist conults, they decided to put him under this evening and

re-work the existing Central IV lines. He is too severely Neutropenic (low counts and susceptible to infections)

to get a PIC line or permanent Port. And he has a history of his regular IV's (in arms and legs) collapsing after a day or two. So here we go again.

Elly was up here most of the afternoon and with her background as a Nurse, proved invaluable to his other

nurse when it came time to change his dressings and IV tubings time after time.

Elly snapped these pictures of  Keanut waiting and waiting for the doctors to make their decisions.

 

In case you are keeping track of his counts, he was actually up yesterday to 210

but unfortunately dropped down to 150 today.

He got another round of Vin Christine (funny name for Chemo) so we don't know

what to expect tomorrow.  Supposedly, that drug doesn't hurt their counts as much as others-- but

it does come with some really fun side effects:  hair loss, the runs, vomiting, jaw and joint pain.

We've seen everything but the hair loss with past doses.  But we are in battle mode and ready for anything.

Thanks for the continued prayers and a huge thank you to Rachel, Sheryl and Shannon for cleaning our house in the hopes

that Kean will someday, perhaps in this lifetime make it home.