Oh, I just want to scream at the walls and pound my fists.."THIS SUCKS THIS SUCKS THIS SUCKS" Mille pulled me close at 9:30 last night and whispered "This is the worst night ever".
We still had not been officially entered into the new HealthConnect system (our hospital went live with electronic records during the week we were home), and therefore could not get Millie's oral care to her. Each medication receives a printout with a barcode which is scanned along with Millie's barcoded wristband prior to administering.
I found myself watching with more amusement than impatience the 3 backsides of the nurses huddled around this new mobile computer as they worked out the complexities of scanning and entering the multiple bags of fluids, medications and chemotherapy that were needed. We got to the hospital at 2:30pm and were finally in the system at 10pm. Chemo started at midnight.
I could rant and rave through this whole post about how the rooms suck, our roommates suck, the food sucks, the new computer system sucks, and how life just sucks for a parent in a pediward. I wish I could make it funny.
Even my devious scheme of smuggling in amaretto for my nightly hot chocolate failed with a burned tongue accompanying the inaugural nip.
Did I mention my back hurts?
And the mother in the adjacent bed thinks her daughter is afraid of the dark, so insists on the lights left on all night? And that her alarm on her iPhone went off for 15 minutes this morning at 5:45 with a ringtone of a hiphop duo shouting:
"IT'S PEANUTBUTTER JELLY TIME! PEANUT BUTTER JELLY TIME! PEANUTBUTTER JELLY WITH A BASEBALL BAT".
Over and over and over again. I shook her, I tapped her, I put her phone under 2 pillows. Still, the befuddling and repetitive lyrics were shouted to the room. After more vigorous shaking, she finally woke up and mumbled "sorry" and turned off the phone.
I am pretty sure I slept from 12:30am - 2am and from 6:30 to 7:30. In the between the two dozes, we changed Millie's bedclothes and nightgown twice and, of course, were serenaded by that abnoxious ringtone.
I am hoping for a better night tonight.
One thing we learned today is that the miracle anti-nausea cure I touted in an earlier post is actually a steroid that causes extreme crankiness. Can you say "Roid Rage"? I guess I am happy to know that when Millie is in the hospital reacting to me like a 13 year old who got her cell phone confiscated, that it is the decadron to blame. 'Cause let me tell you she can get mean.
But hey, it is not about me here. This is not a hotel, I am not a client. The doctors and nurses are doing everything they can to save Millie's life. And, although they toss me a compassionate word now and then (a nurse asked me at 4:30 today if I was doing better, as I looked like I was having a tough day earlier when she had seen me), they are not here for me.
And I am not here for me.
Thank you to all of you who are here for me in my stead.
I really am living a grateful life and am astounded and amazed at the love shown by so many to our family.
And appreciate the opportunity to rant, no matter how petty and insignificant my complaints are. It is kind of fun.
You have every right to rant, rave, bitch, moan, scream, cry...your child is suffering... I have not witnessed your struggle first hand...I have only read your posts... Your grace is humbling... I think of Millie often and pray for her health and strength for your family. Much love and peace being sent your way.
ReplyDeleteSandie Wikoff
It's heart breaking when anyone gets cancer, much less a child.
ReplyDeletePlease visit www.orizonresearch.com. ALKA V-6 will help her with her chemo reactions and help to get her body back on track.
GOD BLESS
Hey there, oh the joys of new technology, but it will get sorted out, and hopefully be easier on Millie the next time - you will get through this week like all the rest. I'm sorry it's a frustrating time for you. Hang in there Millie - Dylan and Nicky are sending big hugs to you! I did my run with you and Millie in mind today - thank you for giving me the strength and inspiration. And remember: "you are getting stronger" hugs n hearts to you both - sandy
ReplyDeleteLaura, you make justified anger, frustration and profound concern sound like poetry. You are so strong, I'm in total awe (once again!). I wish I had words or the means to make this go away. Like everyone here, I offer love and a shoulder instead. If you need to rant live...you can call and go at it my dear...I'm here to listen! All my love, Lisa Rokes
ReplyDeleteUnfortunately hospitals are becoming their own worst enemy as far as patient care goes. They are getting even more constrictive trying to make a buck and remain in business in this economy. That makes the humanity of it all seem despair and desolate. I wish you didn't have to add frustration and anger to your already heavily burdened emotions. Hopefully the staff will quickly get up to speed on their new procedures and will start giving the compassionate care back to their little patients. And yes, part of healthcare is being there for the family! You are not mistaken in feeling that someone should also be thinking of your feelings as well. Support, care and compassion and an ear or shoulder to lean on should not be outside the realm of medical care. Thinking of Millie and all of you!
ReplyDelete...cell phones fall into drinks all the time ... and, it happens to be a fact that liquids will stop ANY phone. Put science to work for you! Ed.B.
ReplyDelete