Tuesday, February 28, 2012

Rheumy visit & overnight stay

Well, I feel as though we’re on the right path.  Today we set out early to bring Zachary to school and head to the hospital for Emily’s infusions and doctor appointment.   On our way up the ENT’s called twice to see how Em was doing from yesterday’s procedure.  I asked them to please send copies of everything up here.  Last I knew, that hadn’t happened yet, but I have them working on it here now, too.

I was really hoping that we would see the main doctor today.  I thought it was time to get the many years of experience in to see her.  I was so happy that Dr. E was here today!  She seems so much more relaxed since the new doc was added to her practice.  We went through the whole story again, discussing cultures and the new jaw pain.  As the ENT said that he didn’t think it was from his side, our rheumy thinks that it is.  She played with the jaw a bit and she doesn’t feel any problems with the joints in her jaw.  But she didn’t like the whole “wait to see if there’s an infection” idea, either.  While we’re here, she figured that she would prescribe ROCEPHIN just to be on the safe side.  If the ENT’s had faxed over the sensitivities from last culture we would have a better idea, but it is what it is.  I have to try to remember that these “extra” doctors don’t care the same way, or realize how huge a deal Emily’s conditions and immune suppression are.  I’m happy to have her on an antibiotic.  While I realize that she can’t stay on one forever, I truly believe that she needs one now.

We discussed things like NSAID’s, and how she hasn’t been on one for quite some time.  She’s feeling yucky enough to want to try her hand at Mobic again.  So Dr. E put in a new prescription for Mobic, and they gave her some Singulair here.  We talked about her Methotrexate.  Because Emily gets so itchy and MTX is the only thing that seems to touch it, she is probably the only kid that wants her MTX.  We decided to wait a week or two and then try it at a lower dose.  If she doesn’t get worse after two weeks then we can try her normal dose again.  We were also given the ok to go down on her Prednisone!!!  WOOT!!!  I have been wanting to ask for this, but I know there’s a schedule…  At the moment she’s been on 1.5mls (4.5 mgs).  We are going to go down to 1.25ml for a week, then down to 1ml!  That is huge!!!  I will definitely take 3mgs to 4.5mgs any day.  I was very, very happy about this. And they're going to look into helping us get a hospital bed for her because she has a hard time getting up and she likes to sleep in an almost sitting position.

Tonight’s IViG to boost her immune system was started late so we’ll probably be here until 2-3 tomorrow, but the longer the better.  They are also using a higher dose than they had originally planned to give her a boost.  I’m happy with that.  So is she.  Emily had actually asked me if she could do IViG.  She is so tired of being sick, and I am so tired of worrying about the “what if’s” of her being sick.

While we were in the infusion room we had a med student come talk to us.  She is doing a paper for school about communication between doctors and parents.  I was pretty excited about this, actually.  There are so many things that they don’t teach in medical school that would be a tremendous benefit to doctors.   I think that, like parents, the doctors get conditioned to thinking of little things like surgery as just that- a little thing.  I was thinking about how when we first met our ENT’s with Gir’s ear infections and later with Emily’s adenoidectomy, he so casually declared that she was going to need surgery, have a nice day.  At the time I was devastated.  Now… sometimes surgeries are welcome.  If it helps to change the problem, if it’s the only way… then ok.  But as a parent just thrown into this world, you’re totally overwhelmed.  So we talked about that, relationships with medical personnel, how Em’s diseases have affected us if different ways, and so on.  It was nice, actually.  I had planned on just chillin’ out, catching up on Facebook and maybe mindlessly clicking on some game things.  Real conversation was much better. 

So it was a strange day filled with ups and downs.  I’m so glad that we’re here tonight.  As crazy as that sounds, my hope is that the ENT will call with culture results tomorrow and we’ll have been able to have a plan in place with Dr. E before we leave.  That would rock!  For now, I’m so exhausted that I don’t even really remember what I wrote and re-reading isn’t helping, so I think I’m going to mindlessly click some stuff and head to bed.  I want to thank those of you that are praying for us through this time.  I appreciate every single prayer.  Thank you!


  1. You mentioned Em likes to sleep in an almost sitting position! I sleep that way myself. I've always slept with a TON of pillows. But after spending 11 mo in the hosp and having no choice but to be elevated to at least 45 deg because of having a G Tube and then a PEG tube as well as the multiple times I had NG tubes. My back felt so much better in that position. And then when I got to the nursing home, I just kept sitting up more and more to sleep. I would scare some of the staff because at times I'd end up slumped over. And they'd always fear I'd fall out of the bed. I told them my fat rear end was weight enough to counter my upper body almost hanging off the bed. They were also ALWAYS putting a pillow between my head and the side rail of the bed because I'd try to shove my head through the rail in my sleep. I actually had a few spots on my head that never looked bruised but sure felt bruised from me trying to do that. Now that I am home, I am thankful for my hosp bed and the ton of pillows I have to keep me sitting pretty much straight up. My hubby needs to connect the motor on my bed so the head will raise up. But for now, the pillows suffice.
    Just wanted to let you know, she's not alone in sleeping that way! My back truly does feel better when I sleep in that position. I was sleeping on the couch one night and ended up somehow sliding down so that I was actually laying down. needless to say, my back was NOT happy when I woke up.
    I hope you find some answers while you're in the hosp. I also hope the ENT gets on the ball and you can come up with a treatment plan for her before you leave.
    Take care!

  2. Thank you, Waynette! I asked her if that's why she likes the hospital beds better and she said yes. I think it also helps her congestion. She's always stuffed up. We are hoping that the ENT will call before we leave around 4 today. I won't hold my breath, but at least she's feeling better a bit today with the Rocephin. She said that her jaw doesn't hurt anymore. Gotta love the "it's not my problem" doctor's.