Sat 3 Mar 2007
Back In the Saddle Again
Posted by Jane under Updates
[7] Comments
Andy and I got a lot of much needed sleep last night. We both agree that, besides the night of her surgery, the 30 hours we had Ramona at home was the most terrifying experience of our lives.
As we drove back to the hospital, Ramona in my lap in the front seat to keep her as calm as possible, we were holding hands and praying that she would survive long enough to be readmitted. I’m not trying to be a drama queen, believe me, but I honestly thought she might stop breathing while we were stuck in I-94 traffic.
She’s much better now. We think she was suffering from pretty severe ativan and methadone withdrawal. She vomitted and had diarrhea so much in that 30 hour period that she lost a half pound (which would not get me into my skinny jeans but is like 5% of her body weight). So they’ve got her on a continuous feed through her NG tube and have her all lubed up on sedatives. They’re now going to start that weaning process again but at a much slower rate. Even if we take her home this next week, she would likely stay on the drugs. Which is fine by me! I’d prefer anything to trying to care for the world’s tiniest junky at home. Again, not to pour on the drama, but our first attempt at caring for Ramona at home was a disaster.
So we’re looking into private-duty nursing, which isn’t covered by our insurance. We’re looking into Medicare which might cover some at home services. We’re looking into hospice should Ramona take a turn for the worse.
And we’re taking a good look for the first time at the real possibility of having to make some choices about Ramona’s care. If she’s not able to remain stable at home, what then? We’re trying to figure out if there’s a difference between loving Ramona enough to fight for her and loving her enough to let her go if we need to. We’re getting some peace about all that. Feels like we’re giving it over, not giving up.
We feel like we stared down death for the second time last night (insert drama disclaimer here). So we’re pretty beat down, but looking forward to some rest these next few days. We plan to take Simon to the Nature Museum tomorrow and spend some time really having fun with him, which we haven’t done in a while. And with Andy’s mom here to help and Ramona back in the able care of our PICU nurses, there might even be a date night in our near future.
Love, Jane.
We’re all here at a potluck sharing this update and we will be praying for Ramona!
Blessings!
Dina, Hans and our Church Family
Jane & Andy,
God be with you in this journey. You have and continue to face the hardest stuff of life I have ever seen. How you have done so has amazed me. With faith, honesty and love. I see Jesus in you both every day.
I am honored to call you friends.
Love
Jen
Have you had any update on the echo they did last night? How did it compare with the post-surgery picture?
I am glad you guys are getting a break – it sounds harrowing and there is no need for the drama disclaimer.
Why on earth did they discharge her when she was still going through withdrawal! Ugh.
Shannon!
They will not do a final comparison on the echo until Monday but a preliminary result shows about the same amount of flow, which is good news for now.
As for the discharge, she was on such a small amount of drugs and she had handled her previous weans just great. I trust their judgement and think if they felt that withdrawal was likely, they wouldn’t have sent us home. Just another way Ramona is beating the odds 😉
Jane.
Hey Deitrich’s-
For what it’s worth, under the category of “Why didn’t the doc’s tell us that,” Jane went through withdrawl when we weaned her off phenobarbatol. After getting instructions from the Neorolgist I called back to say, hey, can she suffer wothdrawl? “Oh, yea.” was their response. You think they’d mention that. Is there 12 Step programs for infants?
On another note, I’ve been sharing Ramona’s story with my babysitter (among other people), who you met. She is a nursing student at North Park College, graduates in May. Anyway, she said if you need help she can sit for you or assist in the house, etc. Keep it in mind.
Have fun at the Nature Museum. Michael likes the water room.
Molly
jane thanks so much for your heartfelt updates. . . i’m honing in on my positive thoughts for the family. re: funding sources to cover private duty nursing (e.g., Medicare). i wonder if ramona would be eligible (financially/medically) for a Medicaid waiver . . . through the DSCC (division of specialized care for children) – i really don’t know all the details, but if its something you’d like me to look into (or to see what other resources might be available), i’d be happy to dig around and see if i can find anything. just let me know. – sarah p
http://www.uic.edu/hsc/dscc/
Jane, I am really thinking of you and Andy and just how your lives have changed monumentally overnight in the last two weeks. When George told me about Ramona’s surgery, I couldn’t help but think about our dad after his emergency brain surgeries. Overnight, he was on life support in Finland. When I got to his side, all I wanted was to be able to fly him back to the states on a hospital bed, quit my job and care for him forever. But that couldn’t happen for a number of reasons and I’m not sure that that is what my dad would have wanted for me or him. Everything you guys are dealing with is the real stuff, no drama disclaimers necessary. I am praying for Ramona, and praying for you guys. God is slowly unfolding his plan for her. You guys are tremendous people with remarkable faith and honesty. My heart goes out to you guys, because nothing you are doing or facing is easy. With love and support, Juliet