Friends...I warn you...if you're needing a happy, feel-good blog entry...SKIP THIS ONE! Today was challenging. Brooke had her INR done this afternoon and it's back down to 1.4. What is up with these levels? Our sweet nurse calls the doctor to give him the results and as it turns out...he's on vacation. She did talk to him and he was frustrated with the levels. It seems he totally forgot to see that Brooke was taken care of during his absence. That hurt. He put Brooke back on 5 days of the big, bad Coumadin dose and 2 days of the lesser dose. The big dose for that many days scares me because that's what she was on last week when her INR spiked to 3.7. Granted, she was on Lovenox at the same time as the big dose so maybe (hopefully!) this won't tear her stomach up like it did last week. I wouldn't mind the big dose for that many days if I knew there was a check point somewhere in the middle of the week, but there's not. He ordered her next INR to be done a week from Monday. Am I missing something here? Coumadin is the most unpredictable drug there is. Please God...watch over Brooke and help me know if there's a problem I need to be aware of!!!
Some of the stress in our life comes from having to deal with injustices and the frustration of not understanding why they have to be there in the first place. Why is it be harder to get Brooke medical care and why should we have to drive 4 hours to receive it? Why is everything getting more complicated as she gets older? Did you know, and this still bothers me, that we had to hire a lawyer and pay her $2,500 just so we could keep Brooke? I'm serious. It's law...when a handicapped person turns 18, they must have legal guardianship in place or else they become wards of the state. Go figure.
If you really want a glimpse into the inner workings of raising a special needs person...check out the paperwork and the processes involved. These are enough to drive a person mad. And respite. Ever hear of respite? It sounds better than babysitter, especially when talking about a 19 year old girl. Most parents play the childcare game for 6-10 years and then it's over. Finding, interviewing, trusting, scheduling and tracking care givers for Brooke is a full time job itself. This has been a constant in our world for over 16 years. Right now we have 6 people (including Mike and I) who can care for her which is the most we've ever had. It takes a team of people (very special people) to care for Brooke and not just anyone is comfortable dealing with a medically fragile person. We are blessed to have a great support system, but it can be exhausting managing it.
Record-keeping. I am the record keepingest person that ever lived. If I could name a degree after myself it would be something pertaining to record-keeping. This has been a skill of mine that has been put to use time and time again and something that I feel is crucial at times. I kept a seizure journal to see if I could find a pattern to her seizures (didn't happen), a treatment log for 7 years so we could find a pattern for what worked and what didn't (found it and fixed it), and most recently - a blood clot medication chart that helps me keep track of her meds, side effects, and INR results. I can't remember all of this stuff, so I put it in charts, journals, tables, etc. All of these things are a part of our life that sit quietly in the background and go unnoticed by most. I have always said..."It's not Brooke that's hard, it's the paperwork and processes that go along with her."
As hard as it is, and as tiring as it's become...I wouldn't trade a second of any of it. "Thank you God for giving me the skills needed to care for this child. Thank you for giving me common sense. Thank you for giving me the ability to research when I don't have an answer, and the ability to ask questions when I'm unsure. Thank you for my perserverance and determination, even though it intimidates some people. Thank you for Brooke and everything she has taught us." ----AMEN
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