Fully Trusting

I was talking to Michelle last night (before I ordered her phone OFF!) and discussing the roller coaster ride that is our life right now. We talked about how amazing it was that Milissa came off the ventilator, and how she physically looks better today. Then Michelle mentioned that the doctor took her (and my parents) aside last night and discussed the situation. She mentioned possibly having to intubate Milissa again and how close they came to having to completely paralyze her on Tuesday...and that it isn't out of the picture. I know the conversation was necessary to keep them informed and thinking realistically, and I know that the doctor sees things from a different perspective than we do. That being said, I just wish we could level off for awhile. If I never see the words "Call me as soon as you get this" on a text again, it will be a good thing. Hate those words. When I think about the sheer number of people praying for my sweet sister and for our family, when I think about how God has answered those prayers one by one, my heart overflows. Why do I want Him to do things differently? He is capable of totally healing her in one fell swoop, so to speak, but He is choosing to bring her two steps forward, one step back. I need to be okay with that. I need to be fully trusting. Why is this so difficult for me?

Transitions

I sat at the bedside this evening of a dear sister in Christ. After suffering from the complications of diabetes for many years, her body is tired. She has made the decision to end dialysis treatment and is living what will be her final days at home, surrounded by a host of loving family members and friends. As I sat with her tonight, at times her eyes were hazy. Other times they were bright and clear. Perhaps the most poignant moment was when she looked straight into my eyes with her beautiful, knowing blue eyes and quoted, "In My Father’s house are many mansions; if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again and receive you to Myself; that where I am, there you may be also." I thought about these words as I watched her loving husband of almost 62 years look into her eyes as if she were a young bride...his young bride. I watched her daughter and grandchildren comfort her, one of her precious great grandchildren adoringly lean over the bed railing and tell her he loved her. I started thinking about transitions--from infancy to childhood, to teen years, young adult, middle age, old age--and about how difficult some of life's transitions can be for us. Single to married, childless to a family, full house to empty nest...and then the ultimate transition. How difficult it can be for us to let go of our loved ones...and yet that final transition is the one we are preparing for from birth. Our Father's house. At one point during our visit, my sweet friend said, "I'm going home. I'd like to wait for all of you, but..." As her words trailed off I felt the conflicting emotions of holding on and letting go. "Yes! Wait, I don't want to see your family go through the pain of saying goodbye. I want to see your smile at church and our famous Christmas party and talk about recipes." That, and in the same breath..."No! Go, leave the struggles of this life and be free from pain." As I was struggling for words, she suddenly brightened and said, "Sing to me. About heaven." We did. She then asked for a prayer. Before we left, a kiss and an I love you...because that IS this sweet lady's standard greeting and goodbye. We'll all be there, to make this transition as easy as possible for her and especially for her family. And then some day she'll be there on the welcoming committee. The one with the beautiful smile and the twinkling eyes.

A Few Things

Shame on me for not updating my blog since that last post about the change in dates. It isn't like I haven't had a LOT on my mind to share, but just like everyone else I have been knee-deep in life. Maybe even thigh-deep...coming close to my waist. As I write this, Caleigh is continuing to rest and recover in her own sweet time. I have a few observations to share (surprise!) now that we have reached this point, but first I need to say how blessed we are to have so many people who support us. The prayers, calls, texts, gifts, meals...we appreciated everything more than we can say. Help at school and help from neighbors to get all the details in place so that we could be gone and focus on Caleigh...we are so very thankful for this as well. I know at least one family who is probably facing vns surgery soon, and others may read this as well--so I want to share a few things for them, and for my own documentation purposes.

1. If given the option for an overnight stay, take it. We were given the option and did not choose to do so which I regret. It should have been encouraged, not just mentioned. Children with epilepsy, at least in Caleigh's case, need time to wake up. This is something that I will be sharing with her doctors.

2. Some numbers that "changed" during our experience. We were initially told that she would have the device activated in one week. At surgery we were told 2 weeks. We were initially told that it would take "a while" to see the full effect of the surgery. Now they say 6 months AT LEAST. I'm not implying that anyone misled us, but ask specific questions.

3. I watched the surgeon note to place her chest incision under the arm...and he didn't. We're okay with that, but I want to know why. We'll address this with the surgeon at follow up next month. Nothing can be done now, and he may have a perfectly good reason, but I need to know.

4. It isn't as "quick and easy" as you're led to believe. It's still at least two hours of surgery with general anesthesia and two incisions. The incisions are bigger than I thought, and she has had some significant pain.

These are just observations. Would we still go through with it if given a do-over? Yes, but I would like to be more prepared. I still stand by my previous advice to NOT read too much. I read more than I should have last summer, but I gave myself time to forget a lot of that. In looking for some post-op information last night, I happened across some stuff I shouldn't have.

All in all, things are good. She will try to go to school tomorrow...although I'm not sure she's really ready. She still is sleeping a lot. She hasn't take much pain medication at all, mostly at night (and this morning when I took off the bandages!) but she is uncomfortable. Our appointment for May 20th is sort of a big deal to me. While we won't see the full benefit of the surgery for quite some time, we will see how she tolerates the device being turned on. I'm nervous about that, though I will not let her know.

Thanks again for every single prayer. We are so thankful to be at this point!

Some Information--Including the Correct Date!

As I posted on fb, the date for Caleigh's VNS surgery has been changed to May 5th. This would be because her overwhelmed and slightly fatigued mother wasn't thinking last Monday. We scheduled the surgery for two days before her dance recital. Let's just say that she was less than pleased when we made the discovery. She has worked really hard since September learning these dances. Keep in mind, when you are having seizures every two minutes, learning/memorizing two fairly complicated jazz dances is not easy. Have I mentioned the girl is a master at compensating? Also, we have paid for two costumes and two pairs of jazz shoes. And if you haven't priced them lately, we could pay rent on a decent sized house for a month. Okay, not in today's economy, but the things are stinkin' expensive. So I called the surgeon's office--I found the number RIGHT under the statement "PLEASE DO NOT CANCEL YOUR CHILD'S SURGERY FOR ANY REASON ONCE WE HAVE SCHEDULED IT". Yeah, I know...although I wondered why they gave me the number if they didn't expect a call. She didn't yell at me or anything and we are on the list for 5/5/11. What a Cinco de Mayo celebration!


I know a lot of people have never heard of VNS and some would like to know more. So, I borrowed a picture and I'll use my own "Mom Speak" to try to tell you a little bit. Basically, VNS is a sort of pacemaker for the brain. This is NOT brain surgery, however. The vagus nerve conveniently passes by the carotid artery in the neck on it's path through the body. She will have an incision in her neck where the leads will be wrapped around the nerve, and one in her chest where the generator is placed. Her surgeon is actually "dance costume/prom dress/wedding dress" savvy and said for girls he likes to make the chest incision under the arm. Nice, huh? About a week after surgery the stimulator will be turned on and then for six weeks or so we will be beating a path to SA to visit with our neurologist there for programming. The stimulator will be set to do its thing every 30 seconds to 5 minutes, depending on her response. The vagus nerve acts as sort of a "natural electrode" and stimulates her brain to straighten up and is supposed to reduce the number of seizures. She will also have a magnet that she/us/school nurse etc. can use to "jumpstart" things if needed. It looks like a watch--it is worn on the wrist and is swiped across her generator in the chest as needed for an extra boost. The surgery is 1-2 hours long and requires general anesthesia. She will still be on her seizure meds indefinitely. Boo. I know. But it takes a while to see how she will do with VNS. She will be released from the hospital same day if all goes well, though because of past anesthesia stuff (she painted the inside of my car pink after her tonsillectomy), we will be staying in Houston that night. The surgeon thought it best that we stay in the area anyway since we don't live close by. You can read as much as you want by searching VNS. If you were so inclined, you would see quickly why I am limiting what I read. There is always something. I researched this quite a bit last summer, and we feel confident in the decision as I said before. But you can scare yourself silly. I'd rather pray without ceasing. So that's it! Thanks for reading--I am open to any questions. I've probably heard them before, but I don't mind.

So What Are You Doing on April 14th?

If you're not busy, you could join us in praying for a successful VNS surgery for Caleigh Faith. We tried our best, our neurologists both tried, but it has come down to this. In a few short weeks Caleigh will have what is actually a very simple and straightforward surgery that we hope will make all the difference in the world to her. Despite trying every medication on the market for her type of epilepsy, plus a few that aren't widely used, the results just never have been long lasting. She has what her neurologists call a "honeymoon" with each drug...but all too quickly the honeymoon ends! There are all kinds of analogies that they use...sort of interesting. She will have the surgery at Texas Children's Hospital in Houston, but they are allowing us to use our "home" neurologist in San Antonio to do the weekly programming that will take place for at least 6 weeks. Thank you Lord. If I had to drive to Houston every week for 6+ weeks...

When Dr. W. first came in today he was talking about how her blood levels were good and that we might be able to play with these two meds a little and put off surgery a bit longer...then he looked at her EEG. I can't describe what it does to me when I see his face as he reads the EEG. This is the second time that I've watched his face fall--today he looked at it and just said, "Nevermind. It's time." She had a ridiculous number of seizures during her 30 min. test today. Ridiculous.

This was not an easy decision and was not taken lightly. Basically, there is still a chance that she could outgrow this disorder. Unfortunately, even Dr. W. (who is known in neurology circles as the smartest man on the planet) can't predict the future. Will she outgrow it? And when? In a year, two, three? That's a long time to a 10 year old girl. And if she doesn't, the odds of her going on to develop grand mal seizures (which won't go away) shoots up considerably. In the meantime, she is struggling in ways that very few of us understand. The energy that it takes for her to compensate, which we all agree she does extremely well, is taking a toll on her. School is not fun anymore, it stresses her--and not just a little bit. Every seemingly ordinary milestone becomes complicated. Summer camp, going places with friends, everything is affected. We are very confident that we made the right decision.

I really am so tired my brain has now shut down. I just decided to write while everything was fresh on my mind. I'll follow up in a day or two with some more information about VNS and how it works. BTW, I thought it was interesting that both of Caleigh's grandfathers asked how she is dealing with this decision. (I know, she has sweet grandpas--and grandmas!) She is handling it very well. She asked the surgeon a couple of questions. Bless her sweet heart, she's worried about her singing voice--because you KNOW she just might be the next tween sensation! He explained that her voice WILL be affected, but that it tends to fade over time. She is also worried about the actual surgery, understandably, but I think we have calmed some of those fears. She told us in the car tonight that she's ready--and that she thinks this is a good thing if it will help her feel good again. We agree.