Random Thoughts and Thanks

I feel like I could take a starring role in a Zombie movie right now . . . I'm so tired physically but even more so emotionally.  Today we made a lot of headway in various pre-planning tasks related to Noah's services.  This was SO hard to do, but it won't get easier if we wait . . .

I've been very blessed with several friends coming over this week to help with everything from rearranging the playroom to doing my grocery shopping to peeling and freezing our massive kiwi fruit harvest (betcha that last one doesn't show up on very many "how to help a hurting friend lists" LOL).  I'm learning to be better about relinquishing control and am even letting a friend bake Sarah's birthday cupcakes tomorrow.


I've also been very blessed by so many of YOU - the comments here and on Facebook have been such an encouragement.  I've been touched by so many of you who've shared your own experiences with loss, those of you who have just let us know that you are sorry and are praying, and those of you who have offered sage advice and wise insight.  We consider every bit of it and appreciate it all.

We've been blessed with the gift of some financial help for Noah's funeral and burial.  Several of you mentioned the potentially staggering cost of a casket, and I wanted to let you know that a Christian woodworker in a neighboring town heard of Noah and has actually made him a custom, solid oak casket as a gift.  I haven't seen it, but the hospice social worker brought over pictures of it today.  It is truly lovely and was made with many tears and prayers for our sweet boy. 

Thanks to some organizational help from a friend, we've moved Noah into the playroom.  The older children are taking turns sleeping in there on a nice air mattress (and are actually squabbling over whose turn it is since they all want to sleep there every night!)  Noah seems much more settled and content, and I LOVE being able to sit beside his bed in the rocking chair and hold his hand, read to him, etc., or being able to climb right into bed with him.  (In the boy's room, the bed was against the wall on one side, which meant all of his drains and tubes hung on the other side, leaving no real way to lie down with him.)  The playroom is becoming the focus of the house and when Noah is awake there is almost always a sibling snuggled in bed with him and a couple more scattered around reading quietly.  He's just soaking it all up and loves it.  When he is sleeping, they either sit there quietly or go to the family room.  It's working very well so far!

We have two precious nurses coming to sit with him tomorrow night (he is WAY more than a one-man job right now) so that we can all go to the Connie Maxwell Christmas program after Sarah's birthday dinner.  It's hard to think of leaving him, but this is really important to Sarah and Noah seems pretty pleased at the idea of having two of his "girlfriends" to himself.  :-)

Noah is still struggling with significant pain at times.  He'll start a fentanyl PCA tomorrow.  This is an IV pump that will connect to the TPN lumen of his central line and will drip IV fentanyl around the clock.  If he has breakthrough pain, he can push a button to bolus more medicine - it's programmed so that he can't overdose, of course.  We'll be switching around some other pain meds and probably adding haldol and/or ativan to the mix.

He's getting transfused on Monday (did I mention that last time?)

He's having some trouble with his wonderful new broviac.  Part of the cuff (that holds the line in place and protects against infection) is exposed.  There are two solid stitches still holding the line in place and this is not an emergency right now, but the line may need to be replaced.  It can't be done in Greenville since they don't do dual lumen lines.  We saw the surgeon in Greenville yesterday and he said to follow up with the surgeons in Winston Salem since it was their line.  We aren't about to just zip up to W-S for an outpatient visit, so Dr. B contacted them today and made arrangements for Noah's primary nurse to take pictures and email them to the W-S surgeons tomorrow.  If the line does need to be replaced, we'll probably use Angel Flight to get Noah to W-S.  (Deanna, Crystal, Sandra, Sandra, and Leisl - are you SURE you didn't put him up to this??)

I put this last bit on Facebook too, so forgive me if you see it twice -

I'm embarrassed to have to do this . . . I've had a couple of people contact me wanting to know ideas of things our children might like for Christmas, but I've been so scatter brained and tired (think Zombie Kate) that I've forgotten who asked. They ARE each getting a gift from us and will be happy with what they are getting, but I don't want to ignore anyone who asked this. I honestly can't keep up with who is getting what, so I created a public Google Doc wishlist editable by anyone with the link (so people can mark or delete something if you get it). If you were one of the ones who asked, please just message or email me and I'll send you the link. This is NOT me implying that the children need or are entitled to anything extra - I just feel horrible forgetting to get back to those who asked.

 With much to be thankful for,

Zombie Mama Kate