Well, today has been a much better day than I originally anticipated. I expected it to be a good day, but not to be filled with so much peace! That's always a pleasant surprise. I am so grateful to have had a Thursday night church service that carried me through today floating on air. Today I fully realize how blessed I am.
I am blessed to have doctors that actually care about their patients, and don't have that "holier than thou" attitude. I think that those types of doctors, the ones who think they they are right without even asking for the facts, they miss a lot. The ones that care- that really go out of their way to help you- they are worth keeping forever. Because I didn't know what else to do yesterday, I called our hospital to ask what we should do but no one answered when I called. I left a message and tried a few more times, but to no avail. I made an appointment with our pediatrician again, figuring that it couldn't hurt. I was a little reluctant only because she had put Emily on Zithromax but then I called the Infectious Disease docs and they put her on Ceftin. I didn't feel happy about going behind her back, but with as immune suppressed as Emily is, it takes a specialist to fully understand the complexities of the situation. Emily's Remicade kills her T-cells and Rituxan kills the B-cells of the immune system. A 5 day course of Zithromax is like throwing a pebble at a plexiglass window and hoping it will break it. Also, our first ENT had never bothered to fax her the sensitivity report so she had nothing to go on. Ugh! All was fine and dandy until Emily's stomach rebelled against the Ceftin. That left me in an "uh-oh... what do I do?" type of situation. So, I picked up the Zithromax anyway and gave her a dose, despite knowing that it wasn't going to work. She had also put Zachary on Zithromax, even when I said that I thought it was the same sinus infection that didn't respond to Z-max. Also, because she said it was a sinus infection and I have now had 2 ID doctors, a rheumy, 2 nurse practitioners, and the ENT all tell me that Zithromax doesn't normally work for sinus infections. I'm not one to tell the doctors what to do (even when I probably should) so I just went with it. Thursday morning Zach got up coughing and with extreme mucus in his throat, so we went back. And she says, "I'm so sorry. I should have listened to you." Wow!!! I love her anyway, but that was kind of cool. I was stunned to find out that Zach had developed an ear infection while on Zithromax. Zithromax is usually very good for ear infections! Emily had gotten worse, too, but her chest sounded good. Zach is more prone to wheezing than Emily.
Today I was still trying to figure out where to go next, trying to figure out a nice way of telling our rheumies that I thought we needed that immunologist now, when I had an ENT's office call me to tell me that we have an appointment for April 30th. I have more faith in the ENT's up there because they work more closely with the crew that we know and love. I feel more secure having our team all in one place. Then I shouldn't have to fight to get our rheumies the sensitivities! They are all so helpful, so wonderful to us. They coordinate for us when I'm still trying to figure out what to do. Now we just need to get through until then.
Also, I am floating on air knowing that soon I will be able to spend much more time at home! I desperately miss my kids when I go to work and have to drop them at school. I feel terrible making Emily go when she's feeling miserable from the sinus infection, when she's too tired to move, when she's stiff, sore and hurting. It is very stressful for me to make her get up and go, knowing that she really needs to be home. I have made the decision to homeschool her and Zachary next year. We have the virtual school that should make it easy to do. I will also be in school. My classes start this summer session- May 14th! I am so excited!!! I can't wait! I think it will be hard to school them and take classes myself, but I know that I can do it. I know that it will be better for all of us. I will have to work long days almost every single weekend, but we all make sacrifices for our kids. I want to spend every minute with them, so this is good. I'll still be out enough to have conversation, I'll get them out to scouts and church. I think it will be wonderful! Besides, Zach needs more one-on-one. He lacks focus, but at his age we still have time to work on that. I feel free in a way that I haven't felt before. I had wanted to be a SAHM back when Emily was born. By the time I found out Zach was on the way I knew that I couldn't do it with two babies. I wasn't cut out for that! It was terribly hard on me for the year that I did it, and I said that I wouldn't do it again, but they're older now and in many ways they are so much easier. And I am so in love with them!!! I feel like this is a whole new chapter in our lives. It's scary, but good!!! Please pray that it all works out! <3
*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!
Friday, April 13, 2012
A little clarity
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You are my hero! Keep those kiddos always close to your heart. Love youReplyDelete
So excited for you and your new chapter!! Will be praying for you! We had decided to home school Caleb next year too and then this wonderful Autism Center fell into our laps(or we fell into theirs)like an answered pray. I know that feeling of relief that you have found a plan that works for your family!! Sending you many hugs!!ReplyDelete