Daughter is sick..

We are all thinking of you! Take care of yourself in the process too!

Ok, we are now back in the Barbara Bush wing. I am soo glad. BeachyBum to answer your question, they are waiting for biopsies that they took to come back to make sure it's not Crohn's. They dont believe it is because the upper intestine looks good. Its the lower intestine that looks like it went through the blender. She tolerated the Remicaid well last night. We should know in the next few days when we might be able to come home. Really we are terribly lucky that I am able to stay right here with her. Even just buying meals from the cafeteria, and necessities, razors, shaving cream, conditioner is getting super expensive. Tonight will be a better night I think. We should have biopsy results back tomorrow.

Glad things are finally looking better for you both Kelly.
If not Crohn's, do they have any idea of what caused this to be so severe ?

((((Wynonna and Kelly)))))

Kelly, I hope they fiqure it all out soon. And you are holding up so well. If you want to talk, whine, bitch, cry, scream, what ever. Just PM me the phone number and I will call you when ever its convienent for you. It wont cost me a dime.

Well BeachyBum, they believe it was the C diff (clostridium difficile) that caused it to get to the point it's at. Once this flare up is under control, they are going to try to keep her from getting the c diff by placing her on strong probiotic medication for atleast 6 months. Chelle, I have been holding up pretty well. Last night I fell apart after she went to bed and cried for half the night. I think I just needed to get it out and I feel much better and less stressed today. Now that I have had a good cry, I feel like I am at the point where I can start to get things under control, so now it's just me thinking "what's the next step?" I have to get the laundry out of the dryer, some other parent is waiting to use it, but thanks for listening to me crab .....I will be back with more news as I find out

Kelly, of course you can come here to crab. And to panic and freak out or grieve or whatever else you need to do. We all need to do that from time to time. Give her our love and hopefully, she'll start getting better as the Remicaid starts to work.

We just saw the Dr. At this point, he said within two days of administering, the Remicaid should be producing significant results, and it's not. They are waiting for the results of the biopsies that they took. Her pain is still too much to be sending her home, and the Remicaid isn't having the immediate relief that they hoped it would. He is going to feel out the situation for the next day or two. If the biopsies come back and it's ulcerative colitis only, and the pain continues to be significant they may consider waiting one more week and giving her next dose of Remicaid here and seeing if it improves on 2nd dose, or removing her colon (which would mean a permanent cure for the colitis). He said we will talk about Crohns if the biopsies show results of Crohns. I don't know what that would entail. So, at this point it's still wait and see. It's very frustrating, but what can we do? It's hard because we had things that needed to be done at home, some roof repair, some home improvement stuff, etc. All I can think about, other than what's going on down here is how am I ever going to catch up when I get back home? Especially where Dr appts and other things related to medical issues are going to take up a lot of time and I won't have the time to do the other stuff. The money is slowly weeding our savings we had for the new furnace we were going to get, and Wynonna wasn't able to work her summer job and earn her school clothes money. I guess I should just worry about it later after we do end up going home, I just dont want to be bombarded all at once. I sure could use all of your prayers for the best possible outcome..thanks

Christine

P& PT!

I'm so sorry.

Kelly,
I'm so sorry you and Wynonna are going through this. I hope & pray things get better soon

Kelly,

I know it's really overwhelming and frustrating and painful . Just take it one day at a time, and try not to worry about things at home. There's lots of good people /advice on this site, and lots of resources to help if you need it when you get home.

Still praying for your family

Different news today, better but still not great. They feel that everything is much better and we are closer to the point of going home, but what's stopping us is Wynonnas pain. They said that her xrays look good and the Remicade is working slowly but she is still having a lot of pain. The DR said if not for the pain issue that he would consider sending us home. I am just so tired at this point and haven't slept in a real bed for a month since before coming here she was sick for about 2 weeks and I slept on the couch at night so that I could hear her if she got up in pain or if she got sick or needed me. I certainly haven't slept since being here. I just want to go home and sleep in a real bed, my bed, for a couple days straight. I miss my husband,son,parents,dog, etc. The good news is that since this whole thing started I think I have lost about 10 lbs or more from the stress. My pants are falling off and I have to keep pulling them up (kind of awkward). The Dr still hasn't had a chance to compare slides of both colonoscopies (the one done up home and the one done here) He says he is hoping that this whole thing was caused by C diff, if that's the case and we are able to keep the c diff away, then she shouldn't have any problems. So everything looks ok, he is going to determine what it is after comparing slides and there is one blood test that he sent out to california that will take two weeks to come back and help him decide definitively if it is crohn's, colitis, or just complications from having the C diff really bad. So thats where we are at today.

Oh Kelly, I'm glad things are getting better.
I stayed in a hospital chair for a month when my brother had his accident I know what you're going through.
I wish some of us were close enough to help you physically.
Hang in there and realize we are all sending you positive energy and prayers.

I'm so glad to hear things are starting to move in a better direction. I hope her pain is under control soon so you can both get home. Ditto what Scar said, prayers and good vibes are still headed your way.

That is SO much better than your last post! I have been so worried for you both. I will continue to keep you in my thoughts and prayers. With luck, you'll be home soon.

Glad to hear things are on the mend! Prayers sent that the rest of the results come back quickly, that Wynonna's pain goes away, and that you get your wish of sleeping in your own bed much sooner than later!!!

HUGS!

I am so glad they they decided to take this seriously and are looking at every possible diagnosis. I am praying for both of you. And I hope you do get that sleep.

Whew, after all of that, they let us come home Sat! Unfortunately there were so many sick kids that they were sending some home, others had to stay in the ER because the floor was completely full. So since she was close, but not quite where they wanted her to be, they decided that they would send her home. I just have to be in contact letting them know everything every couple days. I have already had to fight the pharmacy and insurance since either the pharmacy doesn't carry, or insurance won't approve some of the 7 prescriptions that they sent her home with. At this point I am so happy that we are home and she is feeling a little better and that I am able to sleep in my own bed. Though I do have a mess to sort out with the financial situation when I got home. It cost over $200.00 just in gas for hubby to come down get us and bring us back. Not counting the money for meals on the way down for hubby and meals on the way back for the 3 of us. About $200.00 for meals for me while I was down there, and about $100. in misc stuff that one of the Drs wanted us to get for her to take everyday that is over the counter, aloe vera juice, Vit D3, Lecithin, Fish Oil caplets, etc. One of the major things they wanted her to have was the probiotic Florastor which the ins won't pay for. The pharmacy told me was $99.98, I told them to keep it because we are just tapped out at this point. I won't even know what the phone calls will cost until we get our phone bill. We are canceling the remodeling that we had planned. I am trying to figure out right now how we are going to manage getting the kids school clothes at this point. If any of you know where I can get some gently used clothes for the kids, let me know. The local thrift shop doesn't have barely anything for teens, mostly little kids and elderly. Once we get past this part of things hopefully everything else will settle itself out. She goes on the ist of Aug for her next Remicade treatment which can be done at the hospital up here. She will have them every few weeks over the next 6 months and at the end of 6 mos we have to go back down to Portland and she will have to have another colonosopy. I thought I would pop in and just let you all know that we are home, and thanks for the cards Karen and Chelle. Wynonna opened them and loved the picture that your kids drew Chelle (it was so cute!) and Karen the confetti was sweet! Thanks to everyone else for the well wishes and virtual hugs and prayers!

I am so glad you are both back home! Im also so sorry that you are going through such a tough time. I am so disgusted with health insurance.. why on earth won't they pay for her medication?

I wish I could help with everything.

Glad she is home and doing well. I would definetely find out who makes the Probiotic, and call them to see if you can get it cheaper or free. Or ask for a cheaper one.
I also hate health insurance companies, they just tick me off.

I was just thinking, can you ask the doctor for samples of the medication? They often have them and are more than willing to help.

Plus, post on freecycle if you have it in your area for the clothes.. you might be pleasantly surprised at what you get.

Kelly, I am so glad you are both home

What size clothing are you looking for? My kids are little but I have a good friend with two teenagers and last weekend while I was there someone dropped off a garbage bag full of stuff that mostly still had tags on it and it didn't fit her girls.
Do you belong to freecycle? If not you should definitely check it out www.freecycle.org