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!

Frustrated

While I try very, very hard to remain positive 99% of the time, I am far from immune to rough weeks.  This has been one of them.  This week I find myself simply discouraged.  For once,  I look around and see more negative than positive.  I hate that.  I am trying very hard to build myself back up, but it's not been easy.

I had spoken to our ENT's office twice last week.  First because Em was more stuffy than she was after the first week on antibiotics.  Granted, she didn't have a fever, but that is pretty normal for her.  She had been draining a LOT still- more than I though was normal.  They told me to just keep using saline.  I was having a hard time expressing myself with this.  I couldn't prove that she was sick, but sure seemed to be doing about what she was when she was sick.  When they called to confirm our appointment I brought it up again.  I didn't think that she could wait until today, but she did!

Friday morning I had a very hard time getting her up.  She was struggling, teary-eyed, and not very with it.  She was coughing.  A lot.  And, just when it was time to leave, my son yells to me, "MOM!  Emily is vomiting mucus".  Woot!  She spent about ten minutes vomiting.  This is seriously just not fair to her, and it's breaking my heart.  All that she wants is to get better.  She agreed to the surgery because it is supposed to help.

Today we went back for stage II of the surgery.  By this point her eyes are all bloodshot, around her eyes is bright red, she has what looks like a popped blood vessel- all from coughing.  She sounds all junky, and she's still very sniffly.  I knew that they wouldn't declare her "fixed".  I wasn't expecting more non-answers.  (Not their fault- they want scientific evidence.)  They did a culture to make sure that there is no lingering infection.  They told me today that, while she is still congested, she's not really junked-up in the sinus cavities.  The inside of her nose is still very inflamed.  He said that usually this type on inflammation is more of a systemic reaction, often from other problems like reflux.  Well, I can rule reflux out since she's on an adult dose of Prilosec as it is. 

I had pretty much figured that I would be calling her rheumatologists shortly after our appointment, but I wasn't really expecting to tell them that this may be arthritis-related.  So, I called them to tell them about the nasal inflammation, beg them for IViG (to help boost her immune system) and also to tell them about her brand new jaw pain.  I was really, really hoping this would be the result of blocked sinuses or another infection.   The ENT checked her ears, analyzed the sinus drainage, felt her jaw, and determined that this isn't his department.  Her lymph nodes are swollen, too.    Fortunately, her rheumie's office called me back tonight.  We are staying at the hospital tomorrow night for her IViG.  She didn't technically have an appointment scheduled to see the doctor, but they are going to look at her given how much is going wrong right now.  For that I am very grateful.  I just feel so helpless right now.  One thing that people don't understand is how great the risk of infection is for these kids.  She is at a much higher risk of dying from a silly little infection that healthy people can shake off without a thought.  Another reason why we strive to gain awareness: this is much more serious than people often realize, and it can be very deadly.

So, currently I am frustrated with this stupid sinus infection that is really messing with her.  I am frustrated that I don't have a medical degree so that doctor's that don't really know me will listen to me.  And I am frustrated that I can't keep her home on days like Friday when she really needs to be home, away from kids that are germy and sent to school anyway.  It makes me feel so terrible for her!  I also feel that perhaps both of my kids would be doing better in school if I could home school them.  We are working on it.  I know that things will work out.  I just would like that to happen now, please!!!