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Hospital Stays over and over and over...

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Posted 2/17/2014 8:32 PM (GMT 0)
OK-lots of negatives I could go into, but I have some awesome friends.

One of them called the Chick-fil-a and had lunch delivered to me:) When she explained I was not from here, they didn't even charge her.

Gotta focus on the positives.
Posted 2/17/2014 9:00 PM (GMT 0)
Roccyd,

I hope, after all of this, they erect an entire wing to the hospital and name it after you...



M.
Posted 2/18/2014 5:25 AM (GMT 0)
Prayers continue
And here are some hugs too.
Posted 2/28/2014 12:25 PM (GMT 0)
Keep crossing those fingers and anything else you can.
The plan is for discharge tomorrow-finally. This admission began Jan 30. I can't believe I've spent a whole MONTH in the hospital. One huge positive is that I'm leaving with crutches and not a walker.

Unfortunately, I have surgery scheduled in 2 weeks, but I'm trying not to focus on that right now.

I just can't wait to get home and see my son. Being 3hrs away has been so incredibly hard. I have been so impressed with him and his behavior. A month is a long time for a 10yr old to stay with relatives and not have mom. I just want to hug him and squish him :)

Thank you so much for your prayers and support. This has been a hard month with some hard conversations, but I'll go into all that later.

Please let this be my last day in here....Bring on Saturday!
Posted 2/28/2014 1:52 PM (GMT 0)
It's nice to see that you're leaving on crutches and not a walker.

Fingers and toes crossed for this weekend that you will finally be home, - It's hard to believe how long this journey has been for you! You are one heck of a trooper.



M.
Posted 2/28/2014 5:16 PM (GMT 0)
I will pray and hope for your discharge tomorrow. You poor thing, a month is a long time in hospital. You need to rest and build up your strength, no overdoing it honey. The last thing you need is surgery but if it's going to help you, then it's worth it. Hope things improve for you from now.

Huge (((((hugs)))))

Jane x
Posted 3/1/2014 5:10 PM (GMT 0)
Just had the absolute best phone call with my son. He called to tell me he was coming to visit. I told him today was not a good day for a visit. He didn't say anything but I heard a big sigh. I then asked him if he would rather come and pick me up to go home. He let out a huge scream and then started to cry. After a month, it's time for the dynamic duo to be together again. Goodbye Duke-great treatment but ready for home.
My Dr is in the process of scheduling a surgery for the week of the 10th, but for now I was told to go home and rest up. I am using crutches and sometimes a cane. Hopefully it won't be for long. I hate any outward signs of illness. I've also been on high doses of steroids(higher than my usual daily dose) so I may look a little different as well. I have Cushing's so I'm already pleasantly plump :) I lot of my meds have been switched and a few added. The pain team here did talk to my pain dr back home so everyone is on the same page. My pain dr called me this morning just to say hi and see how I was doing. We talked for about 30min. Love him-I know, I say that quite a bit. We talked about the upcoming surgery next week and he said to let that hospitals pain team do what they want and not to worry. I am a worrier.
I don't know when I'm going to talk to little man about the next surgery. When I know ahead of time I try to make it easier on him. I buy little gifts and cards for him to get while he's with my parents. Again, I'll be 3hrs away, but this time north and not south. I just need to not stress about this right now. I just need to enjoy my week at home.
Posted 3/1/2014 5:39 PM (GMT 0)
Cheers! I am so pleased and especially happy you get to see your little man soon! My heart goes out to you and your son..... I will pray for you ongoing, for a safe and peaceful surgery scheduled in March.

Have a wonderful time with your little man!

Warm regards,

Sandra
Posted 3/1/2014 5:53 PM (GMT 0)
Yessss!

Now this is the news we've been waiting to hear! I am so happy for you, and your little man. That was so clever how you told him you were coming home.

What a lovely surprise and quite a welcomed one after such a long stay.

If I could draw balloons here, I'd hand you a big bouquet of them!



M.
Posted 3/1/2014 6:08 PM (GMT 0)
Yeah !!
I know you will enjoy your time at home w/ family & friends..

Prayers
Posted 3/2/2014 2:26 PM (GMT 0)
So happy you are getting home to spend some time with your little man before your next surgery. Try to put the surgery to the back of your mind and just enjoy this week with your boy.

Thinking of you

Jane
Posted 3/4/2014 7:44 PM (GMT 0)
Well-I made it home for one full day. Woke up around 3am Monday morning with a high fever. Currently hanging out in the ICU at Lewis Gale. This is crazy. I quit.
Now it's a wait and watch game. Drs took blood cultures and will tailor the treatment to what grows.
Nathan, as you would expect, is not happy. After a month, he was home for only one full day. NOT FAIR
Posted 3/4/2014 9:14 PM (GMT 0)
If I weren't following your posts, I'd never believe all of this could possibly happen to one single individual, back to back like this. Dear God, may you please get a break in all of this.

My heart aches when I read that last post you made. I am so sorry you're not getting any release from this onslaught.

You're in my prayers and thoughts.

Dang. I'm speechless. And you know I like to yammer. But,.....wow.




M.
Posted 3/6/2014 9:51 AM (GMT 0)
I can't believe you got only one day at home, you poor girl. You don't deserve all this bad luck. It's really not fair. I pray this is just simple infection and you'll be home before you know it.

I hate to see you suffer like this. Take care honey.

(((Hugs)))

Jane x
Posted 3/6/2014 10:57 PM (GMT 0)
Oh no. I was hoping you were at home healing. You poor girl. I hope they find out what's causing the fever really fast, and get after it. You're in my thoughts and prayers.

love and hugs
Loretta
Posted 3/7/2014 3:24 AM (GMT 0)
Discharged today:) Never found a reason for the fever. Cultures came back clean and fever vanished after the first day. Drs think it might be related to the autoimmune mess. At least the port came back clean so I didn't have to get it pulled. So glad to be home and little man is happy as well. He wasn't allowed to visit in the ICU since he's under 12.

Now for more fun. I have surgery scheduled for Tues at MCV-3 hrs from here. While at Duke it was decided that the heterotropic bone that is growing against the TMJ implants needs to be removed. First-it is incredibly painful. Right now I'm taking 30 oxycodone every 3hrs and using a Fentanyl 50mcg patch until the bone can be removed. 2nd-one possibility for the crazy way over active autoimmune complications is that my body is trying to fight the bone growth and the removal might cause things to get more to baseline. 3rd-the more quickly the bone is removed, the less damage caused to the implants.

Needless to say, I'm not looking forward to this at all. Ideally, I'll only be inpatient for a day. Usually jaw surgeries have fewer complications than the other surgeries I've had. Major organs aren't involved. Still, it's going to be painful due to all the nerves in your face. Of course, it hurts enough now so what's the problem?

Again, thanks so much for the kind thoughts and well-wishes. They mean so much because you guys know exactly how exhausting it is to have chronic pain. I can't wait for all this to be done and over. Not just for me-I wish it could be over for all of us.
Posted 3/7/2014 1:44 PM (GMT 0)
So glad you are home and able to spend some time with Nathan before your surgery on Tuesday. It must be an awful thought to have yet more surgery. For most of us your surgery would be a big thing, but after everything you have been through, I'm sure you'll cope with this. It does sound painful, many years ago I had several dental surgeries and they were awful. I think facial pain is harder to deal with than pain elsewhere on the body. I pray it all goes well for you and you are only in hospital a day. Let us know when you can.

(((Hugs)))

Jane
Posted 3/8/2014 4:05 PM (GMT 0)
Sending you prayers, and really, reeeeaally hoping you get a reprieve for all this!


..........M.
Posted 3/11/2014 11:49 AM (GMT 0)
Today is the day. Hopefully this surgery will provide some sort of relief.
Posted 3/11/2014 4:01 PM (GMT 0)
We are all praying for a successful surgery & the least amount of pain possible for you. You are one tough lady and we know you will do fine. Lots of prayers & hugs coming your way.
Posted 3/11/2014 4:49 PM (GMT 0)
Will be thinking of you and praying for a good outcome. You've come through worse honey, I pray this surgery is without complications and you are back home quickly.

Huge ((((hugs)))

Jane
Posted 3/14/2014 4:48 AM (GMT 0)
Made it through surgery on Tues. Dr was shocked at what he found. I had the TMJs replaced a few years ago. Due to increased pain/swelling, I had a CT done which showed heterotropic bone growing on each side. Dr went in and removed over 2in of bone on each side. It was growing up the tendons on each side of the skull. Dr. talked to the inventing/head dr of the implants and he had never heard of or seen this problem. There are only a handful of drs that actually replace the TMJs and this was a new problem to them. They wanted pictures and scans so I signed a release. The head dr wants to pass them on to the engineers and the other drs to see. My surgeon said instead of being smooth bone, both sides were shaped like chess pieces.

Hopefully the removal of the bone will all my opening to increase and less pain. Right now I look awful. I resemble a chipmonk who has swallowed bowling balls. The crazy bruising is now setting in, which is made worse by the fact that I take blood thinners.

Plan is to go home tomorrow. I think this surgery might hurt worse than the replacements surgery. Drs are trying to get the pain under control, but it's hard. I just want to go home. My sister has been with me and she'll do the 3hr drive home. Wish I could just click my ruby red slippers...
Posted 3/14/2014 5:22 PM (GMT 0)
One step down,...

I'm glad that surgery is finally over. Hopefully your chipmunk status will heal quickly and you'll get down to something more like a squirrel? That's not too bad,....

It's good to hear it's over. It's strange to hear how unfamiliar all the docs and engineers are with regards to the problems you've had. We like to think that by the time they're performing these surgeries on us, they've pretty much seen it all.

This is one way to make history. You'll be in some newly published guidebook and maybe even textbooks....

Roc, the infamous chipmunk, takes to town!







M.
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