Ok, so just so everyone can see the crazy, up/down days that we have, I will post a breakdown of the day. This is why we are so used to dealing with stress.
8 A.M.- The kids don't want to get up (and neither do I!) but we get up & ready to go.
9:30 A.M.- We leave and take Zachary to school.
10:20 A.M.- We arrive at the ENT. We wait for about an hour, which is fine because we were so early.
11:20 A.M.- We get set up with the nurse. Being a mom now accustomed to the things that doctors need I have a typewritten list of meds that Emily is currently on, a print out of all prescriptions taken since the start of the infection with the antibiotics highlighted in yellow, along with CT scans and the radiology reports.
11:30 A.M.- The doc comes in with the scans. He starts showing us how the sinuses should look and how Emily's are not performing where they should be. The Ethmoid sinus looks good from a frontal view but not so much as you go farther back. He throws out two ideas. One is that we can do the culture that our pedi requested under anesthesia to find out which antibiotics will work best against this. The second option is that we can do exactly the same thing, plus add on another ten minutes to scrape the junk out of the inner sinuses. That is the best option to me. If that stuff has been hanging out for God knows how long, it may not come out on its own, and then we'd have to get the scraping done anyway.
Noon- We're talking to a nurse, in hopes of setting up the procedure, but with all of Emily's medicines and such, she doesn't want to do it without consulting our rheumy group. They also want to hold off on prescribing a new antibiotic until they talk to our rheumy's, which leaves me a little nervous.
12:30 P.M.- A nice quiet lunch
1 P.M.- A quick visit to the park! Not that she runs around, but it's nice to go be closer to nature.
2:30 P.M.- We head to my parents house for a visit. During said visit my mom again discusses how more of her colon is blocked and she's afraid that they won't be able to do the 2nd colonoscopy. Also, my father feels tired suddenly so he goes to take his blood pressure. It turns out to be 80/37. Ouch. Mom gets him some potato chips to bring his pressure up and he's good. I take some time to order a bunch of prescription refills.
4:30 P.M.- We head to the school to get Zachary. He tells me how his throat has been hurting all day. Once home I pull out my scope (don't hate) and look down his throat. Bright red. Great.
5 P.M.- While I really want to nap, I realize that I still need to call the pharmacy about Zach's Enbrel. It had appeared in my history, then disappeared a day later. It had also showed that our pay portion was $2100, so I was a lot panicked. I had called a month ago to give them our Enbrel Support info, and I had emailed it as well.It turns out that they LOST that info. I was absolutely thrilled to find out that his Enbrel will be FREE!!! Best. News. Of. The. Day. True story.
5:30 P.M.- I decide to see if my school's website could tell me why I haven't seen any more info about my financial aid. I had electronically signed the paperwork, verified everything and returned it all. I see NO SIGN of that. I once had an amount that I was supposed to be allowed and now I see nothing indicating that I was ever approved. Hmmm. I make a mental note to call on Tuesday when my son vomits. He hadn't told me that his stomach hurt, just like he didn't tell Daddy that his throat hurt. Now I'm really in a panic. Need to take yet another day off of work, make another doctor appointment. I have Omnicef at home, but with him starting Enbrel and needing his Methotrexate on Friday, I really can't take chances. So, I call in to work for tomorrow.
7 P.M.- I realize that I need to scan a bunch of documents relating to their healthcare and send it to the school. I email both kids teacher's.
See the up & down pattern? Welcome to a typical day in my life. And I have it easy compared to the kids. They still have to go to school, pretend that they are normal kids, do their normal work, then have their meds, their shots, the infusions and the constant doctor appointments and tests. Thank you Lord for making children resiliant!!!
*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!
Wednesday, January 25, 2012
ENT and Enbrel!
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I feel you Danielle. We have had days like this too. Hang in there. I am so happy about the Enbrel resolution! You deserve a bright spot! Here's to tomorrow being boring... we love boring :)ReplyDelete