Manimal Update: Today wasn't as good as yesterday, which I expected. He went off the morphine at 6 am - fed up with the freaky dreams. Unfortunately, he didn't take the other pain meds until two in the afternoon. Stubborn man. He'd already been up walking twice when I got there just after everyone else's lunch. The physiotherapist came in to check his lungs. A little congested. More coughing/breathing exercises needed. His white blood cell count is elevated. He looked totally exhausted when they were done.
On her way out, she passed the enterostomy nurse coming in to give us the lesson and show me what supplies we'll need to buy. Holy moley, this is like a whole other world. Yes, it was gross, but nothing like I feared. And nowhere near as scary now that I've seen it. She was really nice and answered all the questions I could think of. I'm sure I'll have a dozen more tomorrow, but I'm feeling a little more confident. Then his nurse came in to take the catheter out, and as soon as she left, the nutritionist came in. I politely but firmly told her to come back later in the week. He isn't even on a clear fluid diet yet, so I'm pretty sure he can do without hearing what foods he should eat...eventually.
At that point, I could see he was getting very un-nerved. He started telling me all these people wanted to poke him with needles and jostle him and he was hungry, but after the popsicle yesterday, he felt sick to his stomach. Oh, how well I remember it...Pain+Fatigue+Frustration=a rapid loss of confidence that it will ever get better. I let him talk for a bit and just held his hand. Then I tucked him in with orders to sleep for a while. He called me two hours later apologizing. I swear, there's no way I was this polite when *I* was the patient!!
When I got back he looked a lot better. We went for a long stroll down the hallways. Just like old times, only now he's the one pushing the IV pole. Geez, I sound like we're ninety. He admitted he's having a hard time with memories of his dad. I expected it. He's still grieving, so of course the two emotional upheavals are going to play against each other. I want to keep him talking because I'm really afraid he's going to try to be "tough" and end up slipping into a depression.
My email is a-go again, but I'm sorry, I just don't have the energy to reply to everyone individually yet. I'm reading them though and trying to keep my cell voicemail empty, but I feel like I'm fighting a losing battle so please bear with me. I do get to it asap.
To the friends who have stood by us or come out of the woodwork...please know I am eternally grateful. There's nothing worse than feeling alone and abandonded when you're going through something so unexpected and foreign to any experience you've ever had.
Tink...gawd, girl. What can I say? You know how much we love and need ya, right? Are you sure you and Tippy can't get posted here??? {{{hugs}}}
Motorman...Thank you just doesn't seem enough. Please keep reciting, "Payback's gonna be such a bitch." ; )
S...Thank you! That would be wonderful. I'll contact you soon or feel free to give her my email addy whenever you think it's time. I really appreciate it.
Andrea...Thank you! Yes, it will be reversed, so it's a paste wafer. They've told us 3 - 6 months...any idea how they determine when it's time to reverse? Will the recovery from the reversal surgery be as bad as this one? Anything you can share is so appreciated. I'm so sorry your DS went through this, but I'm grateful for your info & support.
Beebles Update: She should be getting out of hospital on Friday. They've delayed it twice to adjust her medication. As her very wise son said, better a few days now than a relapse.
Robyn Update: I keep hearing I have to take care of myself. As soon as I find the time, I will. There's a lot I'll have to say once I'm not dealing with this 24-7. For now it's safe to say I've learned many harsh lessons in the past two weeks. More fool me.
On her way out, she passed the enterostomy nurse coming in to give us the lesson and show me what supplies we'll need to buy. Holy moley, this is like a whole other world. Yes, it was gross, but nothing like I feared. And nowhere near as scary now that I've seen it. She was really nice and answered all the questions I could think of. I'm sure I'll have a dozen more tomorrow, but I'm feeling a little more confident. Then his nurse came in to take the catheter out, and as soon as she left, the nutritionist came in. I politely but firmly told her to come back later in the week. He isn't even on a clear fluid diet yet, so I'm pretty sure he can do without hearing what foods he should eat...eventually.
At that point, I could see he was getting very un-nerved. He started telling me all these people wanted to poke him with needles and jostle him and he was hungry, but after the popsicle yesterday, he felt sick to his stomach. Oh, how well I remember it...Pain+Fatigue+Frustration=a rapid loss of confidence that it will ever get better. I let him talk for a bit and just held his hand. Then I tucked him in with orders to sleep for a while. He called me two hours later apologizing. I swear, there's no way I was this polite when *I* was the patient!!
When I got back he looked a lot better. We went for a long stroll down the hallways. Just like old times, only now he's the one pushing the IV pole. Geez, I sound like we're ninety. He admitted he's having a hard time with memories of his dad. I expected it. He's still grieving, so of course the two emotional upheavals are going to play against each other. I want to keep him talking because I'm really afraid he's going to try to be "tough" and end up slipping into a depression.
My email is a-go again, but I'm sorry, I just don't have the energy to reply to everyone individually yet. I'm reading them though and trying to keep my cell voicemail empty, but I feel like I'm fighting a losing battle so please bear with me. I do get to it asap.
To the friends who have stood by us or come out of the woodwork...please know I am eternally grateful. There's nothing worse than feeling alone and abandonded when you're going through something so unexpected and foreign to any experience you've ever had.
Tink...gawd, girl. What can I say? You know how much we love and need ya, right? Are you sure you and Tippy can't get posted here??? {{{hugs}}}
Motorman...Thank you just doesn't seem enough. Please keep reciting, "Payback's gonna be such a bitch." ; )
S...Thank you! That would be wonderful. I'll contact you soon or feel free to give her my email addy whenever you think it's time. I really appreciate it.
Andrea...Thank you! Yes, it will be reversed, so it's a paste wafer. They've told us 3 - 6 months...any idea how they determine when it's time to reverse? Will the recovery from the reversal surgery be as bad as this one? Anything you can share is so appreciated. I'm so sorry your DS went through this, but I'm grateful for your info & support.
Beebles Update: She should be getting out of hospital on Friday. They've delayed it twice to adjust her medication. As her very wise son said, better a few days now than a relapse.
Robyn Update: I keep hearing I have to take care of myself. As soon as I find the time, I will. There's a lot I'll have to say once I'm not dealing with this 24-7. For now it's safe to say I've learned many harsh lessons in the past two weeks. More fool me.
5 comments:
Lesson's learned... shall I give you my list???
Will go email my friend now and get back to you. I'll send your email addy's and tell her you're on facebook.
S.
Aww Tweet - I've not visitied blogs all week so completely missed all of this. So sorry!
Jeez, I've never expressed sympathy to one person so much in such a short period of time. You've had so much more heartache than is your share. I can't help but wonder . . . it one of your cat's black?????
I had to deal with a version of this - but my patient was a 4 month old and the situation was resolved by the time she was 8 months old. My only jewel of wisdom - he's probably not going to find the nickname "poop belly" all that amusing as time goes by.
Let this be your mantra - "this too will end!"
You are in my thoughts.
Love you - Mean it!
Keepin' up on stuff through Mamacita and Motorman.
Just across the road...enough said
Love Yas
It's Sunday morning and you're in my thoughts: no words of wisdom, just my prayers that you are all taking care of each other and that a smidge of your time is devoted to taking care of Robyn :)
hey hon
I m so worried about you but know you are strong..Have a timmy s and take a moment for your self.
mamal has a guardian angel protecting him
Luv ya
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