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Posted 4/19/2015 4:07 AM (GMT 0)
Inpatient again. I'm so over this mess. Hate it. Done.
I'll update more later-just:AAAAARRRRRGGGGGHHHHH (not to b said like a pirate)
Posted 4/19/2015 7:01 AM (GMT 0)
So sorry Roc, I know its difficult not to mention frustrating but you have a good reason to keep pushing on. Keep him in the forefront of why you do what you do.
Posted 4/19/2015 7:07 AM (GMT 0)
I'm sorry. I can sympathize.

I see in your signature that you have gastroparesis. I only recently was diagnosed with this. Are you having any luck managing it? It has me very overwhelmed. Thanks and I hope you recover quickly so you can return home to your baby.
Posted 4/19/2015 3:10 PM (GMT 0)
Oh man...SUCKS.

((( Rocckyd ))))

Take the time you need, even though the pirate in you wants to abandon ship. ;-)

*praying for healing*
Posted 4/19/2015 3:30 PM (GMT 0)
Sending healing prayers. ❤️
Posted 4/19/2015 10:54 PM (GMT 0)
No, the gastroparesis is not well controlled, but it's due to other autoimmune issues. Nothing is controlled :(
Inpatient due to symptom control, pain control, electrolytes and anemia. Tomorrow I'm having a procedure due widen my esophagus. The GI thinks the connective tissue is inflamed which is preventing me from being able to swallow and take my meds. Not looking forward to it because my jaw opens about 14mm. I've been promised that I'll be comfortable, but everything with the jaw is awful. Pain management has been by daily which has been helpful.
If the throat is not the problem, I'm pretty much screwed-per GI. The stomach and colon have extensive nerve damage since I've been fighting this essentially my whole life. I do not want back on TPN due to my history of fungal sepsis. My med team feels the same since my immune system is down and out. However, my body rejects gj/nj/j tubes. I lived in the hospital due to complications and caught hospital acquired infections.
Things just aren't good. Even if I catch a break, and it's my throat, I'm having difficulties in other areas. Oxygen levels have been an issue, and my INR levels have been up and down.
Really, just not good.
I'm physically and mentally overwhelmed and exhausted.
It sucks.
Posted 4/19/2015 11:57 PM (GMT 0)
I'm so sorry. Are you having your esophagus dilated? If so, you won't feel a thing. I have a condition that causes my esophagus to swell shut. I have to have about 2 dilations a year. They will sedate you with an iv and that's the last that you'll remember. Afterwards, you may have a dull pain but it won't last very long.

I'm sorry you are having to deal with all of this. I wish there was more that could help. It is overwhelming when your body makes such essential needs like eating a painful problem.
Posted 4/20/2015 2:25 AM (GMT 0)
Thanks
The actually procedure is not the problem, it's the fact that my jaw doesn't open due to the replacements. I'm on a first name basis with the anesthologists since I have an unstable airway. I've had a ton of procedures, and I do have an awesome team. They give just enough anesthesia to get the muscles to relax and then see if a pediatric bite block will fit. They never force it because they know the complications. At another facility I was with Drs that weren't familiar with the while situation. They saw TMJ and assumed it was like what 80% of people deal with-not appreciating that I have replacements. My muscles and jaw locked down and my back tooth had to be removed at a later date due to the scope chipping it when it was yanked out. Ended up with an NG for a bit since I couldn't chew or swallow until the spasms finally relented.

Lucky for me, my pain doc and his wife are both anesthologists. She came by this afternoon and said I'm hers for tomorrow:)

Trying to prevent a transfer. If the area around the Nissin is not the problem, Duke wants me down there. Hate being 3hrs away from home, and my kid hates it. He told me on the phone today that he's sorry that he spent the night with friends Friday, and wasn't at home. He thinks he could've helped in some way, preventing the ER visit. Love his heart.

Angelic-what's up with the GP? Do your Drs have a clue in how to treat it? Motility specialists are the best, but hard to come by.
Posted 4/20/2015 3:28 AM (GMT 0)
Right now I'm at beginning stages with it. I have a gastroenterologist (similar to your experience I can call and say its time for a dilation and he fits me in the next day). Because of the genetic syndrome I have, we have to be careful with medications. My kidneys aren't in good shape.

I was already on a very restricted diet because we were trying to find a source for my esophageal swelling. I've done so many tests, its crazy. With my last dilation, the Dr noticed a good amount of food in stomach and this was after fasting for over 12 hours. I had been dealing with extreme abdominal pain, severe vomiting and nausea, and just a complete lack of appetite. I think having a couple of "rare" issues made the drs a little less likely to attribute those symptoms to a new issue. That and my old pcp kind of shrugging me off. He just kept giving me phernergren.

about a week after they found the undigested food I had my first stomach emptying study. It secured the gastroparesis diagnosis. Right now I am on a very restricted diet. Mostly fluids, in fact. I tried reglan but it did nothing for me. The Dr is working with my nephrologist to find a treatment that won't strain my kidneys.

My life right now consists of vomiting all the time, severe abdominal pain, and massive weight loss. Ive had to go in for IVs a few times. If I'm good and stick to fluids I can go a few days before getting sick. Its hard to not be seriously depressed. This gets to me more than my other stuff because eating is supposed to be an easy, even enjoyable activity and for me it's incredibly stressful. If I can swallow (the esophagus problem causes me to randomly choke) then I have to hope my stomach is going to digest the food.

My kids are like your son. A few months ago I choked on oatmeal while eating breakfast with my kids. My son called 911. He's a brave kid and I hate that they ever have to see that. It has to be scary. He has said he's afraid to stay the night other places because he thinks I may need him. That hurts more than anything.
Posted 4/20/2015 12:24 PM (GMT 0)
 

  shakehead Hey ROCK...That should be your username, because YOU ARE=)

I feared this "ditch" following your fun in the sun water park trip, but I tried to think positive only for y'all.  As I said then...those  memories of his happy face and your unincumbered dip in the water...well, priceless. 

I missed you and asked for you on my "HELL" thread.  You had asked about protocol with my bowel issues. I was afraid when you didn't post back that you'd gotten sick.  I'm sorry, doll baby.

((HUGS))

Posted 4/21/2015 4:09 AM (GMT 0)
Bad day today. I'll type more later, but just wanted to ask for some get well wishes.

My Rocky theme song is not as loud lately.
Posted 4/21/2015 4:32 AM (GMT 0)
You have My get well wishes and all my prayers for you rocckyd!! Just Keep the faith! This is just another of your life's hurdles for you to over come! You can do!!!

May God's Peace be always with YOU!!

White Beard
Posted 4/21/2015 1:08 PM (GMT 0)
Get Well Wishes!!!! Prayers too for you Rocky to be able to hear your theme song loud and clear as you progress right on down the hall and out the door sometime soon. Thanks for keeping us up with your progress, also your lack of progress so we can keep you at the top of our thoughts. Blessings dear one!!
Posted 4/21/2015 1:17 PM (GMT 0)
Of course I'm praying for you and yours!
Posted 4/21/2015 2:57 PM (GMT 0)
 

  cool I put on my shades for sunny days ahead.  There will be, my friend.  Take this time to rest and be taken care of.  Never doubt that we're all HERE for you.  Keep us posted as you feel up to it.

Hugs~Dixie

Posted 4/21/2015 7:43 PM (GMT 0)
Still here. Most of you guys know the whole GI saga. Inflammation has caused the need for feeding tubes and IV nutrition in the past. Yesterday the GI used a balloon to widen throat and he also found ulcers where pills have become stuck in the inflammation. He's pretty sure that he didn't fix the problem and it's yet another unnamed diagnosis. My med team is pushing for a transfer down to Duke, but I hate being 3hrs away from my little man. Right now my local Drs are working well with my Duke crew.

The jaw replacements have felt brutal. The procedure yesterday stretched my 14mm opening to its max and I woke up with the muscles spasmed tight. I still can't throw up due to the tightness, but my body thinks I can, so I end up retching in a bucket. This also makes my jaw and head explode.

Last night was AWFUL! Thank goodness pain management rounded early this morning. Currently have a PCA, and no real answers.

You guys know me-I try so hard to find a positive something, somewhere... I really can't find one.
Posted 4/21/2015 8:10 PM (GMT 0)
 

  nono No...No...No, Missy!  None of that thinking.  Where there is breath, there is hope...even if it's bad "hospital breath"!?!

Kinda been there, but with no family to embrace me.  I had a husband, but let's just say he left me there alone (2 hours away) to pursue other interests.  Yep, flat of my back in the ICU with tubes, unable to keep down ANYTHING...non-responsive to "enough morphine to sink the Titanic" according to surgeon.

I was close to your age, but didn't have your SUPERHERO SON Nathan, to fight for.  Instead I lay there knowing I was castrated w/no hope of children.  I also knew my husband was not alone in MY bed.  I literally had NOTHING to fight for, but fight I did.  Here I am now, 22 years down the road...I wonder.

Put on those BOXING GLOVES, sweet friend...Don't wait for the BELL...Just start swinging and don't stop til your'e back home where you belong.  Nathan wants to celebrate his mom's day.  Don't you forget it!

I'm SO SORRY you have to go through this, but I am THANKFUL you have the unwavering support of a "spot on" medical team.  They'll get you back on your feet.  We're here.  We'd be THERE with you, if we could.

((((((HUGS)))))))

Posted 4/21/2015 8:52 PM (GMT 0)
I'm with Dixie. We all have our moments and you're certainly entitled to yours....but you only get a moment. Then it's about pulling up your boot straps and being feisty and pushing through the muck and mire. Mom Day's coming and the celebration awaits.
I'm sending my best "get well soon" and a whole bucketload of strength and left over feistis that I'm not using right now. (I'll let you know if I need to borrow 'em back!)

Keeping you and your little man in my prayers!
Posted 4/22/2015 3:24 AM (GMT 0)
Transferring for surgery is being batted around. It would involve a lengthy inpatient stay which is not in my plans.

Hopefully things will stabilize.
Posted 4/22/2015 4:16 AM (GMT 0)
Saying lots of prayers for you rocckyd!!! And sending you healing thoughts! Dixie is right you have your son to think of! Just remember that saying....... "when the going gets tough, the tough gets going!" rocckyd your one of the toughest person I know here! And you have a whole bunch of people here supporting You!! Your not alone in this were with you in spirit all the way!

White Beard
Posted 4/22/2015 9:49 PM (GMT 0)
Oh man....That's news I didn't want to read.

*praying harder!!*
Posted 4/24/2015 6:43 AM (GMT 0)
Rocckyd sweetheart man o man............ I am so sad that you are experiencing this situation.

I understand how difficult it is to have to be subjected to all of this and then on top of it get another unnamed diagnosis. That means you are special inside and out. (no eye rolling lol) I could say all the regular things, chin up, buck up, hang in there etc mostly all boring sayings....

I think you should Shine On! Imagine the beautiful parts of you shining away like rays of sunshine exploding from your body. You are beautiful inside and out but you have to shine on to show it. You CAN do this! I have every faith in the world that this will be looked at as a milestone when it is all said and done. Because as I have read from the threads above you are hard as a rock and I believe it! Now just be a shinny rock!

Hopefully that bit of blabber gave you a bit of a giggle and a smile.

Blessings and love to you xxxxxx I'll pray for you each day to receive the relief you so deserve. xxx
Posted 4/25/2015 3:23 AM (GMT 0)
For now-the plan is to be discharged tomorrow, but it's not really great news. What needs to be done cannot be done at this hospital. Instead of a transfer, I decided to come home and do follow ups Mon and Tues. I'm all tanked up with fluids and electrolytes, so a few days will be ok.

It's been a rough week with tough conversations. Right now, everything is about Quality of Life. You guys have helped me with palliative care decisions before. My body is just worn down. The hospitalist came up for a long talk this evening. Basically we just rehashed everything-looking for something simple that could help.

So-hopefully this time next week I'll have some sort of direction. There will be more hospitalizations in the near future. I told the Dr I'm frustrated because joint surgeries were next on the list. Everything has been focused on preserving organ and system function, but it'd be nice to be able to actually move my body-I'm so demanding, I know.

Pain wise-I'm being well taken care of. I've seen someone from the pain service each day and have an appointment in the clinic Wed. If I get home and realize I misjudged the situation, pain-wise, I can go to the clinic early.

It is what it is
Posted 4/25/2015 4:42 PM (GMT 0)
 

  mad INDEED...It is what it is, for all of us.  Thank God you have pain control and clarity of mind to make your own decisions.  You also have doctors/surgeons who KNOW you and your issues.  You seem to have great faith in your team.  That, my friend...is PRICELESS.

I hope you do get to go home today.  I thinking touching home base with Nathan will be a good dose of feel better.  That's just what you both need.  Maybe y'all can rent a movie if you don't feel up to a matinee together.  Whatever you do..."together" is what matters.  His school year should be winding down in May, right?

Take your time to decide what your next step IS.  You know the drill...Prioritize procedures that will offer maximum QOL.  Can you delay those joint replacements with injections, maybe?

((((HUGS))))

~Dixie

Posted 4/25/2015 6:33 PM (GMT 0)
I have an appointment with palliative care next week. Also have followups with other specialities.

I'll let you guys know how it goes.
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