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Sunday, June 28, 2015

Hello Walkable Feet

Ellie asleep yesterday evening.
Ellie is resting now and we have a long road ahead of us. She has casts from the knee down to toes on both legs. Within those casts are feet at neutral and straight if not pointing out slightly (which is good because her tone pulls them in). She has flat feet! I don't mean that in the can't get into the army way and I can't see if she has a proper arch. But she no longer has feet twisted to the side that don't allow her to stand.  It's a wonder to see and a good thing as I have discussed in my last post.

She also has a foam wedge between her knees and knee immobilizers. It's going to be a very long recovery. Right now she has an epidural block in so she can't feel her hips and pelvis. This is a godsend.  I worry about the pain after that. There's a whole team devoted to her pain management and so far they have been doing great.

Ellie's a bit out of it and uncomfortable - but sleeping intermittently.  She needed a blood transfusion but since she got it her color is a lot better and when she is awake she has more energy.

So far so good.

Amazingly we got assigned a private room so it's quiet which suites Ellie very well as she is such a light sleeper. It's a small reprieve. And of course, it's raining. It rained the day Ellie was born - back in the days when it still rained in Los Angeles.  It rained when she had her brain bleed. It rained when she got ventriculitus when she was still in the NICU.

As we were driving in yesterday it rained too and Dave commented on it.

I love rain and am trying not to see it as a sinister thing. Maybe it's more of a symbol of healing for Ellie?  Maybe it's a way to soften the sharp edges around her?  Maybe it's just rain.

I totally see how superstitions start.

Despite the rain, Ellie survived these many surgeries within a surgery. We will be able to let her stand and in doing so let her organs stretch and breath and allow her body to build bone and muscle.  Because we went through this, ensuring that the pain is worth the gains that these interventions allow is critical.

Friday, June 26, 2015

Surgery Day

Ellie got the "Independence" Award at school!
It's a waiting game right now. Ellie is in surgery and will be for the next 9 hours. They got the PIC line in and the A-line and the epidural and the surgeon just made the main incision for her pelvic osteotomy. I asked my Facebook friends to send good thoughts, and whether you agree with our choice to do this or not, please send love and good thoughts to Ellie.

She has a long road ahead of her  but I believe it's one that leads to better quality of life than what she has now AND ensures that her body will be the healthiest possible so she can have a long life.


Central Question

The big question that has been on my mind in preparing for this surgery is how to manage our energies as parents. I managed other big questions for Ellie like how to get her to gain weight so that she would have more reserves and she did gain 4 pounds! Go team Ellie!  Dave and I both managed all the other agonizing choices and decisions to make leading up to today.

In the past Dave and I have not been good about managing our own energies. Recently, in an episode of "Naked and Afraid" (disclaimer: yes this is a guilty pleasure, and yes, only in America, and no it is not porn) a pair of survivors were just at each other psychically the whole time - jealously weighing who was doing the most work, obsessing whether or not the other would come through with key needs and basically circling each other in the death grip of two drowning people. Finally one tapped out and the other - who was so dysfunctional in the presence of their partner - suddenly became very functional.

Some times Dave and I are like that - not that bad or course - but this dynamic exists in a subtle way - and we just exhaust ourselves in the process which is good for no one - especially Ellie.

The way I have seen us in this dynamic in the past is around how we manage Ellie's hospital time. Typically we both stay by her side for 12 hours and then one of us will stay with her in the hospital over night and the other will go home very late and come back very early then we both stay for 12 more hours and the other one will go home for the night but get back very early. In short, no one gets any rest and we burn out and get cranky and don't have as much brain power to make choices for Ellie because we are so tired.

Last year a friend had to do a similar surgery to what Ellie is going through today and her mom and dad handled the hospital time totally differently. In fact we went in one night and brought the dad some reading material and a beer. He was obviously strained because his child was in pain. But he was also in the flow of it and as such emitted a very calming energy. He was present for his daughter and somewhat rested. Mom was home with the other kids and visited every day but was rested too. After their hospital stay of a week Dad, who stayed at the hospital the whole time with his daughter, had to travel to another country for work and mom took over. And she had the reserves to do so because they had managed their energies so well.

Their easy sharing of the responsibility did not leave them as exhausted as they might have been had they practiced the joined at the hip way Dave and I have managed this in the past. It was still hard but as well managed as it could be.

This time Dave and I are taking longer shifts and giving the other a break in between to catch up on rest. One of us will still be by Ellie's side at all times. Don't get me wrong. We would never leave her in any hospital alone - ever. 

But Dave was up last night with Ellie who, understandably, did not sleep well. She never sleeps well but last night it was particularly bad. And then we were all up by 5am to get out the door to get to the hospital by 6am.  I was up in the middle of the night with her the night before.  The Gods of No Sleep have returned and been camping out with us for a solid 2 years after a year off. Damn them!


Flying Hearts
Once Ellie was in surgery we waited for the first update and then I sent Dave home to go to sleep. He is taking the first night tonight and as we were awaiting the first update he looked exhausted. I'm glad he's gone home to rest.

When something like this happens, a child is ill or injured or maintains a life long disability, 95% of couples split. I can see why because for us anyway, Ellie became our central concern.  We have to remember to also take care of each other - and in the past we have not been good at that and we were younger and had more energy.

Dave will come back toward the end of the time of her surgery late this afternoon and then, once they are settled in a room and if Ellie is ok, I'll go home and come back mid-day tomorrow and stay for two days while he goes home and rests. He will visit of course but only for a couple of hours versus 12 hours. In the mean time I hope he sleeps in, rides his bike, and rests and rest and relaxes and eats well and hydrates. And then he will take the next two day stint I will try to do the same.

When Ellie gets home we are not going to have help caring for her 24/7. I anticipate some very long nights. We will be vigilantly trying to keep ahead of her pain. All her care will be that much more difficult because of her pain, casts, knee immobilizers and wedge. It will be harder to feed her. And this will go on for weeks and we will be balancing this with full time jobs. 

If we exhaust ourselves here - while we have help - we will be all the more tired when she gets home. I want to avoid that.

In truth - maybe the central question really is - how do we survive this experience of raising Ellie and care for each other too?  Maybe in trying to do both we will find not only more grace but more joie de vivre?