Up late and worried

Hey guys,
I didn't know if I should post this or not since it's not directly pain related and words cost money, but you guys are some of the few, very few, who know what's going on. Obviously remove the post if needed...

I'm really worried tonight. My port was switched out today(it's done weekly) and since this was done, I've been feeling awful. Truthfully, I've been sliding down the past few days. Duke and my insurance are "Duking it Out". <--- come on, that's funny :) My Drs want to combine Orencia(which I've had in the past) with IVIG infusions. This is not normally done, so it's a fight. I've been on EVERY med for JRA/RA. Many times I was my drs first patient. I still remember the dr calling me back around '99-2000 about this great new med called Enbrel. That's when I began climbing the traditional med ladder. Now I'm on my own ladder. Kinda scary and lonely. While they duke it out, the only mainline ra med is prednisone. I already have Cushing's after a decade of it, so I'm used to high doses. Painwise, things have been pretty bad. My hands have always somehow been spared, but now they look awful. I don't even recognize them as mine. My lungs have also been troublesome. I did a sleep study last week and I dropped down into the low 80s. That means more O2 use. Still on the TPN due to gastroparesis(paralyzed stomach) caused by inflammation.
Ok, I'm rambling cause I'm stressed. Since the needle switch, the whole port area has been very very painful. I've had chronic pain since elementary school, so not much phases me. This is awful-not running the TPN cause I'm scared to. The area is red and moves up to my shoulder. I also have deep bone pain which is often my only symptom when I'm sick. I just don't have time for this, and I just don't think I can handle yet another inpatient stay. I was last discharged July 25th. This is the longest stretch I've gone in close to two years.
Please please please, if you are able, cross your fingers for me that nothing is seriously wrong. Right now the plan is for my friend to take me to the ER after our boys get on the bus. I'd like to do urgent care, but I've been directed to always go to the ER unless it's an obvious minor problem. I'm scared to death that the port is infected. I'm prone to sepsis which is why I'm working so hard to get off the TPN. Can't get off the TPN until the underlying inflammation is controlled-which is what Duke is working on with the medications.
I'm just so scared that something is seriously wrong due to the increase in pain and just weird feeling. My little guy does not deserve this. We spent the weekend working on campaign posters-running for school president. We have finally fallen back into a routine with school, guitar, and travel soccer.
I just can't be sick...

I hope by now you were able to get some sleep. I'm going to repeat what you already know or you wouldn't have posted. You've been doing this longer than most so you know when somethings not right. You also know port infections are dangerous and more so to an already compromised immune system. That being said you should have already been in there to the hospital and I can't say I know what it is like being inpatient as much as you were this past year but I am a Mom and being away from my kids for that long had to be really hard.

I realize you just wanted him to have some normalcy during the start of the school year and that's what you have done but you can't let your fear rob him of you longer by waiting so long that whatever is going on whether it be infection or not the sooner treatment starts the better the chance of preventing it from becoming systemic and risk a long time inpatient or your life.

So do what you know you have to do and get to the hospital. I wondered about this before but don't think I have asked, is it possible that sometimes your hospital stays could be replaced or cut shorter with home infusion or Home health? I know some Drs are just not keen on it and if your insurance would cover. Also wanted to ask if your able to Skype with your son and I know it is not like being there all the time but you at least can be there to some degree when he relates his school day or games. Just a thought.

Let us know what happens later and sure will keep you and little man in my thoughts.

Gentle hugs, and I'm so sorry for all that's going on. As a mom the worst part of CP for me is missing out on things with my kids, but like Vicki said, the longer you let something go on, the more time you will miss with them. It's a catch-22. Please update on how you are doing. I'll be thinking of you.

Hi rocckyd. Well by now I hope you have some answers, and I hope your port isn't infected! You have been at this long enough to know, so always go by your gut feeling! Better to be save than sorry! If you do have an infection I hope that they got it early and your on antibiotics. I know your concerned about your little boy, but as you know your health has to come first so you can be there for him! I will continue to keep you in my prayers.

May God's Peace be always with YOU!

White Beard

Ok-for now things are ok. Thank Goodness I tested positive for strep. My throat hurt a bit, but I didn't think that would be a problem. Dr said it looked pretty bad so I had a dose of IV antibiotics and have a script for home. They also drew blood for other cultures. The port site is red and looks blistered. The hope is that it's just a really bad reaction to the type of tagaderm used. Almost like a burn. Since the port is accessed, I can't use any cream to help in healing. Er dr called up to oncology and they sent down another type of tagaderm to use.
Er dr said I'm kinda in a grey area. Yes-I tested positive for strep, but there could very likely b another infection. Dr offered admission for pain control and pending test results, but I opted to go home. Obviously, if anything changes, I'm to go right back. He said he is writing an extensive note so I shouldn't have to go thru the whole waiting for hours in the ER while a decision is being made. I'm to follow up with primary tomorrow to double check the strep and white count. Cultures can take up to 72hrs.
So-feel like dirt, but hopefully it's just strep. He was also concerned about the inflammation pretty much throughout my body. I explained about the Duke/meds situation and he said, "That just sucks!". Pretty funny. He gave me some IV pain meds to, as he put it, give me a day where I'm actually ahead of the pain. My pain dr is in the same hospital and I've been with him for over 10yrs. With my crazy med/surgery history, I'm allowed pain meds anytime at the ER or admitted. So-gonna chill today and hopefully things will remain stable.
Yay for strep:)

I'm trying. Tonight is Back to School Night. I've only attended 2 in the past-Nathan is now in 5th. I've always been in the hospital. Little guy has already told me he understands if I can't go. I HATE that a 10yr old is able to understand illness and it's limitations.

Still feel like total dirt, but don't we always?

I do have Home Health but that is only to switch out the port and weekly blood work. I'm not homebound enough for more services. Apparently sitting on the sidelines and watching soccer games and driving to appointments and driving my son to guitar/soccer disqualifies me. Crazy. When he has tourneys out of town, we carpool with teammates. Oh well. Many of you guys that know me, know that being fairly active is the best medicine I have. I want to spend as much time with my son as I can. I have so much going on, I know that every day is special.

Another option that has been kicked around is a stem cell transplant. That scares the "bleep" out of me.

Thanks for all the support. I let you guys know how things are going. It's awesome to have a place where people get it.

Now I'm going to read in front of a nice open window with a beagle at my feet and cats prowling around. Some times I think they are plotting something...

Seems a fair amount of strep going around lately for some reason. The schools here have had many kids absent this month. Good deal you got it early and meds onboard so you shouldn't get worse than you are. Hoping those BCs come back nothing more than regular bacteria growth and you the burn look sounds exactly like a reaction, I do that with almost all bandaids and tape, draw blood and they'll stick a bandaid on it and within 15 mins I will take it off and have a perfect nice red bandaid! !

After getting 5kids through school and attending hundreds of back to school nights they are pretty much the same but for some reason the kids think you gotta go! !. He's getting up there and believe me once he hits middle school your presence will no longer be as important at those functions. We suddenly go to being an embarrassment to preteens. That's all parents not just particular ones. It becomes uncool to have your Mom hanging around school functions? ? Lol go figure right and then about the time you get use to giving them that preteens space they hit high school and you better crawl back into their space and know all things, friends, hangouts, Teachers, and all whether they like it or not. Bright side is you will get a few years break before you have to be the bad guy. Keep him in sports, give him something besides education at school to like know when to get in his space and when not too and never ever let that door of communication slam shut. He will do fine and to them we are not disabled we are just Mom.

Your doing a much better job with him then you will ever give yourself credit for.

Get some rest and hopefully some pain relief as well thanks to a one in a million ER Doc.

That was hard to read of what you're going through, honestly I almost stopped reading it because I was afraid it had worse news in the next few posts. I'm glad things are better at least.

I'm 43, have two boys 9 & 15 and my youngest helps me because he knows what I'm going through. When I came home from my neck fusion surgery and looked the way I did really changed his attitude. I've never seen a young boy his age want to help so much. It's amazing what their little brains can process.

Hope you are feeling good today.