Tuesday, April 8, 2008

Tues night :(

I wasn't here on the day shift but it looks like no one posted todays updates probably because there isn't much to report. I got here a couple hours ago and Rob who was updated from grandma Kathi said he has been really fussy for a while. He is sweating like a mad man again and moaning so I tried holding him upright for a half hour but it didn't make much of a difference. Dr. Such Neibar has change his clonadine orders to every 4 hours if needed so we don't have to try to wake him up (so his BP is higher) just to give him a medication that is supposed to help put him to sleep. We are going to talk tomorrow about adjusting some of the goals for when we go home. I'll update you tomorrow after I talk to her. Because he has been storming/sweating so much he totally stinks. I think I'm going to give him a bath soon since he is already upset. The nurse gave his clonadine 45 min late (not because he was doing well, just because she has been busy with other patients). Now 1 1/2 hours later still no change in his agitation so she checked his residuals and he has 65cc in his stomach. Per orders she is stopping her feeds for 30 min to allow time for digestion. He did have a diaper blow out earlier this evening so he couldn't be too backed up.

Addendum: The nurse stopped his feeds at 10:15 and then an hour later the tech came in and vented his tube and checked residuals again and it was 30cc. We are going to wait 30-60 more min. before starting him up again because we still feel that it is a little too much. One hour after stopping the feeds (11:15) he calmed down and is now asleep with his legs bent.:) It s such a welcome sight after being so upset for >3 hours. If this didn't work we were going to resort to Ativan even though we are supposed to try not to use it anymore. Now I just hope it doesn't interfere with his midnight clonadine dose.


Jada Rose said...

Rob and Angel,

You two are hero's to me. I am constantly praying for miracles with that little kid. But you need to know that at the same time I am thanking God that I know two miraculous individuals such as yourselves. I know it sucks to hear your so inspiring all the time, and its very tiring. Those of us who are watching you go through this feel like we are witnessing something superhuman. You are just being yourselves. laughing, crying, smiling, and even frowning. But your moving forward. And seeing you move forward one day at a time, (one storm) at a time has us, normal humans enhancing ourselves to become better parents, spouses, brothers, sisters, aunts, uncles, grandmas and grandpas. That is a superhuman feat in my book! I love you guys and I cant wait to see you home!


StakerSensations said...

i agree with the same as above. the floods of emotion you must be going through must feel like you are trying to survive in a tidal wave! Stay Strong!!!

Meghan said...

nice. amen doyt. sad it's been a rough day. wear him out in the tubbie so he can get a good nights rest. xo.

whitney said...

Chilton, thanks for putting that into words. I totally agree.
It sucks he is having such a rough time today. Hopefully the bath will help a little and you guys can get some rest tonight. How are they going to figure out his feeding? Are they going to send you home with it all skiwompas like it is? (Rob, how do you spell that word?)
Chilt, now I am totally crying about what you said.

Anonymous said...

It is after 2 am....so, really if you need a "sub" to handle your nite shift or any shift...Jace and I would love to sit there and watch the little stud. Better to be useful than playing on the computer, watching the Jewlery Channel (expensive, but fun addiction), HGTV and the Food Network..Charlie is much cuter than all of them.

Cheryl, you look absolutely amazing.. I wish I could get whatever you got for inspiration. You look like you did when you got married (lighter hair, however).

Love you all, Charlie... your turn is coming.. Thanks to all of you..
Jill B

Anonymous said...

Last night I went home and thought of you and your family. Charlie is fighting so hard and keeping you guys on your toes that is for sure. I remember when I took my daughter home after the first time of her being in the hospital and being diagnosed. Although we sure were happy, scared too. So much to learn . . . Hadn't planned to be a nurse but learned the healthcare system very quickly. For 30 years I have been a patient advocate for people with chronically ill children and will continue to keep you all in my prayers. Wish I was closer so that I could meet you personally because I KNOW that you are an awesome family and will continue to grow. Charlie will have the best life possible with all the support he gets from everyone. Britt will be the best big brother and an outstanding individual because he is learning patience at a very early age. He will learn to defend his brother when needed and to let him fight on his own when he needs to. I just wanted you to know how much you are thought of in Michigan. Have a wonderful day. Kim

Anonymous said...

Charlie you have so many friends from all over praying for you .Rob & Angel Remember to take care of yourselves.Hug Charlie for all who cannot be there in person.Shyla

Ginny said...

All this talk about Britt being a better person because of all of this elicits a response from me (not that it takes much). My sister-in-law has epilepsy and subsequent disabilities and it changed my husband and his family. I truly believe so much of what I love about him (and his family) comes from his experiences with her. Patience, love, understanding, compassion, empathy, selflessness...the list could go on and on. I already see so much of that in you and your family, I have no doubt Britt will be quite the catch!! Watch out, world, here comes the green power ranger with a heart of gold!!!