Life is wonderful and difficult... and I am grateful!

Tuesday, September 13, 2011

I don't know.....

I don't know what to do and I don't feel like blogging.

For one, I am doubting that people even read this anymore (which is fine... I probably would have stopped, myself).
2. I now have a folder so stinkin' thick of Liz's records, I don't need this blog to serve as a history for me. Shoot, her chart doesn't even fit in the chart-holder-thingy on the exam room door at the doctor's office anymore. It is left for the doctor to pick up at the desk and each time she enters our room, she says "I wondered who was here, we only have three charts this big!" Fantastic.
3. I am tired of writing crappy news about Liz feeling crappy from her crap, which in-turn is making our lives crappy! I want to write about fun, happy things.
4. I am finding it more and more difficult to want to stay connected to my friends. I don't even want to write; to blog. It is an irony actually. I really do wish to feel connected yet I feel an instinct to retreat into my own world. Mostly because so many yucky, negative things are going on and I don't want to come off that way. Also, Liz is taking so much of so many aspects of our lives that I really don't have much to say about other things and I am preoccupied with thoughts about her. Who wants to spend time with a girl who has her head in a fog, is undependable because her kid may need her at any moment, and doesn't have much but poop-talk going on in her life?!
All of that ends up to me not wanting to share.
But, I will covet prayer for my girl and I appreciate all the support, and I know some of you do read this and it is the only way you get day-to-day reports on her. So I will blog and gratefully, I will share.

Things with Liz feel like they are going downhill quickly. She came home from the hospital late Friday. Saturday started out alright, but she ended up feeling really sick as the afternoon went on. Sunday she didn't require the heavy pain medication and I took that as a huge positive. Yesterday, Monday, she stayed home from school as she is just so tired and her stomach was super "sore." Sore to Liz is equivalent to agony for most of us because she is just so tolerant and used to the pain. She spent the whole day in her school uniform, knowing she wasn't going. Sweet girl.

Today she insisted she was going to at least try school for a few hours. I spoke with her teacher and decided she'd go for the morning for the math lesson. I dropped Jackson off at his school and came home to get the girls to take them to theirs. Liz she met me in the driveway upset because she had just gone to the bathroom and had a lot of bloody stool. She insisted she was fine and I went along with her pleading to go to class. Against my better judgement, I let her go.She only made it 15 minutes before her teacher called to let me know Liz was in pain and needed to come home. 15 minutes! : (

I don't know what we're going to do about school. I feel a little better because I had a meeting (previously scheduled) today with the school counselor, psychologist, nurse, principal, Liz's teacher and the school's RSP instructor. This meeting was set to develop a 504 Plan- a legal document stating accommodations for Liz. In it things like her needing access to the restroom at all times and having assignments and time lines modified for her due to absences are listed. In Long Beach Unified, a student must be absent four weeks consecutively in order to get home teaching. Since her absences aren't guaranteed to be consecutive and since she is already missing so much and we won't wait around to see if she'll make the 4 week mark (who wants that goal anyway?!) we've come up with a plan for the present....
The plan is to set up a video camera in her class so that she can view tapes from home when she is absent. This way she is getting the same instruction that her classmates are getting.

I don't know what to do about this damn infection! I can see that this drug is not working. She is on day 8 of a 14 day course and her symptoms are not gone. While the other drugs didn't cure the CDiff, she at least had relief while she was on the other antibiotics and the pain, nausea and bleeding would subside. She had samples left at the Lab today, so we should have those results soon. Thursday morning we are meeting with the GI doctor and tomorrow I will speak to the LB Infectious Disease doc... he was off today and I didn't want to page him, totally my decision...I felt like someone in this picture should have a day off from talking about Liz's stool! : )

I don't know what to do to prepare....for anything! I feel the need to get the house perfect in case we end up inpatient and someone else needs to step-in and help with Kate and Jack. Perfect is a strong word, more like the laundry all done and a stocked kitchen at all times. Most women keep a bag packed only in preparation for a rush to the hospital to deliver a baby....I now keep one packed in case we have to go to the hospital.

I don't know what to do. I am trying to use my instincts mixed with knowledge, but I don't know what to do about so much right now.

1 comment:

  1. I love you. I think you are doing as beautifully, and gratefully a job of navigating through this as anyone could. I will pray for not only joy along the journey, but sweet moments of fun as well. Surprises, rainbows, and healthy-happy days for you all. Every word you wrote I nodded my way through reading. I affirm all your feelings if that makes you feel any better. thank you for modeling honesty as we all strive to live the life carved out for us by a loving father.

    In this world you will have many troubles, but be of good cheer for I have overcome the world...

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