Thursday, April 19, 2012

Major steps in the right direction

Last night Sam slept fairly well.  The nurse was kind enough to keep many of the waking events combined instead of in many separate instances throughout the night.  Some progress is that this morning Sam's lips looked much better.  However he still was having a hard time not screaming while he pees.  The nurses suggested adding Morphine on top of his Oxycodene meds to help with the pain.  I suggested that instead, we simply schedule him to urinate about an hour after each Oxycodene administration.

That seemed to work better and in fact, this evening, the pain has practically disappeared in that area.   He just stands there while I hold this little container for him to pee into (which the staff want him to use so they can know exactly how much he is peeing).  He just continues to watch his movie and doesn't even whine.  I've never been so glad to hold a pee bucket for someone.

This morning the attending Dr suggested we consider trying the feeding tube again, even after yesterday's ordeal with it.  I informed the Dr about my little agreement with Sam and he said, "How many of these chocolate milks do you think he will need to satisfy his daily requirement?"  I did a quick calculation in my head and I knew he had me on this.  I blurted out "Six".  He looked at me with a smirk and said,  "Wow, you're right."  That does sound like a huge mountain to climb considering he hadn't even had a single carton in a full day, and we had to go through six?!  Here's the nutrition label for just one individual serving carton.

This morning we really tried to get a headstart on this goal and when I left at 11:30 he had gone through 1 and was 1/4 into another.  I told Cathi of the goal and challenged her to really try to hit at least 5 and then we could argue our case with the Dr.  After spending nearly 6 hours at work I called and he had only finished another one.  So we were at about 2 1/2 milks at that point.

I convinced Cathi to let me take the night shift tonight.  So I was on a mission with Sam,  Two full chocolate milks, hopefully more.  We watched Bugs Life and "Turner and Hooch", which he loved.  Who doesn't love big dogs.

Sam is now feeling much better.  Less in pain,
and much more responsive.  Still far from
being completely normal.  He's still got
a long way to go. 
Throughout the evening we worked on sips of chocolate milk and after a little whining here and there, we rediscussed the options and explained the whole feeding tube in detail with him, encouraging him to take that route, because it really would be easier.  But after yesterday's traumatic incident, he wouldn't even reconsider.  Even though he was so sick of that stuff, he said he wanted more.  Right now we're done for the night and he's finally asleep after having fully completed 4 cartons.  Short of the goal of 6, but a major step in the right direction anyway.  I'm gonna definitely try to defend little Sam's case for not having another nurse attempt to stick that thing up his nose and down his throat only to have it tickle his throat and never successfully make that trip into his stomach.  If I could be guaranteed that the procedure would be successful and that it would take less than 5 minutes.  I'd say let's go for it, but they can't guarantee it.  So as long as Sam shows the determination to really try and make such big improvements in his caloric intake,  I say, let's give the boy a say!

Some of Sam's visitors today included:  Grandma and Grandpa Low, Grandma Gridley and Russ, Kris, Lindsey, Summer and Ryan Sampson, Sister Woodrow (his Primary President), and neighbors Erika and Wyatt Dangel. Not sure who else might have come during the day when I was at work.  Lots of supportive phone calls and kind acts for the kids at home.

Everyone has been so wonderful asking for what they can do to help and stepping up to transport and watch after the other Gridley kids and providing meals.  Sure is nice to have such wonderful family and friends!

I'm so thankful for all the prayers for our Sam.  I'm sure they are a major reason for why it was such a great day today and why he was able to make sure fantastic progress!  Thank you!


Aaron said...

Gordon, I just want you and Cathi to know we're praying for you and Sam, and we really feel like we understand a little bit. We've had other little minor health issues with our kids (nothing like this, of course) where you just beg and plead with them to do the thing that's going to help them, even though they don't want to or it will bring them pain. It's so frustrating to know that you can make things better for them if only they'd let you. You just want so much to be able to make them feel better and be out of pain. We really feel for you both.

I hope he gets better soon!

Elayna said...

So what do they do with kids that need to have the feeding tube that won't swallow? How can they really force him to have it, and if they can get him to get it into his stomach, what is stopping him from just pulling it back out?
Good job at reasoning with him and getting him to drink so much. Have you tried anything other than chocolate milk? maybe something cold like chocolate ice cream ora popcicle? I am so glad that it was such a successful day.

Marcia said...

Sam looked quite a bit better when Russ Jr. and I visited him last night. If you had never seen him before you wouldn't agree--it is still pretty sad to see. It is tough to see a little one suffer so. Sam's the man!

Cathi and Gordon--we are praying for you and the entire family. I see how you encourage and work with Sam. It is tender to witness your love for him.
Thank you for the detailed updates...we all appreciate them. Love, Mom

Aaron said...

Gordon, what about half and half or chocolate milk made from half and half? We feed that to our underweight child instead of milk because it's a ton more calories. 1 cup is about 320 calories. Would that possibly work so that he'd have to drink less?

Gords said...

That's a great idea. I'l have to try that when we get home. Unfortunately the hospital doesn't have that one as option, but I'll take advantage of that when we go home.

BigBrother said...

Make certain little Sam know that his relatives in the Midwest are anxiously following this challenge and faithfully praying for both him and your family. Our heart aches for him. He sounds like such a little trooper. If he will allow it, give him a hug for us. But, know that our hearts and prayers are for Sam and your family. - Ron & Nyla