Ok, so again I am completely exhausted. Forgive me if this doesn't make any sense, but I want to get it out before I forget it all. We had another crazy day. Hospital time runs at a totally different speed than real time. It really seemed like I woke up, blinked, and the day was gone. I didn't even get time to just chill out on Facebook. Emily got quite a bit done. She was up early, got some TV time in, went to the playroom for a while, found a book to read that she enjoyed, played some video games, made some creations and watched a couple of movies.
I started my day by running 2 toys that were given to us to take to the infusion room. I figured that while I was there I would get a copy of her labs. I figured that they may be off a little, but I didn't expect them to be completely out of whack. I was shocked at how many exclamation points there were. (They indicate levels out of range.) Her inflammatory markers are elevated, but with an infection that is to be expected. Her urine was all messed up, but they said that looked more like a contaminated sample. (Phew!) Her liver enzymes (used to measure her muscle activity) look fantastic! Those running amok is one of my biggest fears. Almost everything else was off, though. That worried me, of course. I patiently waited for a few hours to see a doctor. Praise the Lord, we have been through enough of this to not worry just because something looks like it may be a problem. Problems usually seem to not be so glaringly obvious with us.
Towards the end of the day one of the doctors came in. Before I go further, let me say that one thing that I love about our rheumy group is that they don't just treat what looks rheumatological and hope someone else will deal with the "other stuff". Dr. E asked the Infectious Disease doctor to come talk to us. Let me tell you- I was soooo excited to see her. Dr. E had told Dr. V that she had ordered the Rocephin antibiotic because it's very good for sinus infections. We explained once again how the past few months have gone, listing each antibiotic and the amount of time prescribed. We established that I need to be more firm with these other doctors when it comes to prescribing antibiotics for an actual infection. I admit, that's not something that I'm good at. I feel that, while I do probably know more about rheumatology than they do, it's not my place to tell them how to do their jobs, and while I should have a medical degree, I don't actually. We talked about that for a while. She said that she would never prescribe less than a 21 day course of antibiotics for anyone for a sinus infection- never mind an immune suppressed child! I will now be more firm on that.
Despite me asking the ENT's to send over her file, despite me signing paperwork on Monday for them to do just that, they haven't done it yet. Dr. E had her nurse practitioner working on it, too. That said, they could only rely on what I was told by the ENT's from the first culture, which was that it was weak to Augmentin. Knowing that Augmentin was the only antibiotic that seemed to do anything (except for a few days before her scraping when it seemed to stop working) they prescribed a 21 day course. They also want us to keep doing IViG monthly to boost her immune system back up and then maintain it. Yesterday's labwork showed her Igg at 435. They usually do IViG for levels that fall below 500. I feel a huge sense of relief with this.
As I said in yesterday's post, we will wait two weeks to resume her Methotrexate, and then it will be at a lowered dose to begin with. She's one of the few kids that loves her Methotrexate because it helps her to not be so itchy. Dermatomyositis can cause severe itchiness, and even though hers is much better now than it was since her muscles aren't flaring, it's still annoying. I'm more excited about the Prednisone decrease!!! Again, a drop from 4.5mgs (1.5mls) to 3mgs (1ml) is huge!!! She'll have two weeks on 1.25mls, but that's ok. It's been so long since she's had a decrease. I realize that the slower the decrease the less chance of flaring so I wasn't complaining, but perhaps on the new dose she'll be able to lose some more water weight. She is still so self-conscious. And that should help her growth to get back to a more normal rate.
Last but not least, we had a roommate this time. Bless her heart, the girl has Crohn's Disease. She was given the option between trying Remicade via IV or trying a feeding tube at night with formula that would help to heal her colon. She really thought that the tube would be a good idea. That poor girl cried and cried, begging her mom to take it out. Before we left she decided that she would try Remicade- despite having a huge fear of needles. We were able to help them feel more confident about their decision, and give them some idea on what to expect. God puts people where they need to be. I truly think that we may have helped them a bit tonight. I hope so!!! I am hoping that Emily feels much better in the morning, too!
*Written at 12:04 A.M.*
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Thursday, March 1, 2012
Our new plan!
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keep on trucking... glad the little girl was there... I bet you all helped a lot.. more then you know! :)ReplyDelete
I know she will be fine soon, just take good care of her all the time. God Bless!ReplyDelete