Just Wait and See

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Do One Thing

November 12, 2015 by Ellen Moore Leave a Comment

I woke up this morning excited to write about the gratitude I felt because day by day we were experiencing a full week of nurses despite the challenges of staffing. So many reached out after my last post, and I wanted to share that the skies were parting and we were getting back on track. I heard some cool words floating around in my head and I was excited about writing. Then I realized something… Brian didn’t sleep last night. Uh oh.

I ran downstairs. “What the hell happened?” Ugh – I just vowed yesterday to stop cussing. “I’ll have to start over on that one – more important things now,” I thought.

“What do you think happened?” he said.

“Did they call?” I asked, wondering if the agency said she wasn’t coming or if she just didn’t show up.

“Nope. She just didn’t show.”

“What did the agency say when you called them?” Normally, we call the agency if a nurse is late or doesn’t show and they start working to figure out what’s happening. Ideally, they try to get someone to come in for the shift. Let’s be honest, though. A call after midnight isn’t really going to intersect many people who could say yes – even if they answer the phone.

“I didn’t even feel like dealing with it. We can talk with them today. I don’t even care what her excuse was. She’s not coming back.” I understood and agreed 100,000%. This nurse has done this several times. I had even asked our scheduler if she really thought this woman would show up for this shift. “I wish I had that control,” she texted back. Smiley face.

Why does that happen? How does it happen? How can someone who professes to care about helping people (pretty much the textbook definition of a nurse) simply not show up to a shift? Does she even understand what it means to the family? Does she even think about that?

Sometimes I wish these nurses could spend a month depending on someone to allow them to sleep. I’m not sure they’d even understand then, though. A month isn’t exactly enough time to really understand the chronic challenge it is for a family with an already difficult situation not to have sleep.

I kissed Brian goodnight and started getting Catherine ready for school. My blog post twisted in my mind as I started thinking about how we could ask questions to determine if the nurse would be dependable. I have a friend who grew a company from 1 guy with a truck to over 400 employees doing electrical contracting work. When you ask him how he did it, he says, “It’s not that hard. We have one mantra. Just do what you say you’re going to do.”

Exactly. Do what you say you’re going to do. If you can’t do it, don’t say you can. And if you say you can, do all in your power to make it happen. Sure, things come up. Mistakes happen. And if this were the first time for this nurse, we’d certainly consider that. When it becomes a pattern though, it’s pretty clear you are simply not a person who does what you say you will.

We have a saying in our family, “Promise like a princess.” It came from watching a Disney commercial where emphatically, the voice-over uses the voice of Rapunzel and says, “I promise. And when I promise something, I never ever break that promise.” Sarah was at the impressionable age when those princesses really mattered. So I went with it. I even made a pillow that says it. IMG_1596 I want to raise her to be dependable. To keep her promises. To be someone that people can count on for whatever it is she says she will do. And if I get the opportunity to impress that upon Catherine, I absolutely will. Wouldn’t it be cool if somehow Catherine could become a nurse? She’d be the kind that always, and I mean ALWAYS, shows up.

I put Catherine on the bus and told the guys who make me smile every morning that we didn’t have a nurse. I lamented that it was hard for me to believe she just didn’t show up with no call or anything. One said, “I bet you’re tired from being up last night then.” I quickly explained how Brian takes the nights and I take the morning when that happens.

“We hardly see each other,” I said.

And then the driver made my day.

“Well, at least you can’t fight!” So true. And I remembered, there is always – ALWAYS – something to be grateful for no matter how bad it seems. I walked inside with my head a little clearer – grateful for the bus driver who made me laugh and grateful for the nurses who do show up for their shifts, grateful for the experience because it convicted me about how I want to raise my children, and hopeful we have a nurse who simply does one thing – show up tonight.

Filed Under: Gratitude

Routines

August 29, 2013 by Ellen Moore Leave a Comment

Most nights I drink a glass of milk and eat cookies while we watch Big Bang Theory before going to bed. I tried doing it in the H and it just wasn’t the same. Wasn’t even on most nights and i didn’t have the luxury of a DVR.

Tonight, the girls are settled into bed at a reasonable hour. Sarah is all packed up for her first day of Kindergarten tomorrow. Super exciting! Catherine has had a good day on pain meds round the clock so she could rest from the trip yesterday. I got some work done. And Brian did a grocery shop and threw out the bad food in the fridge – which was most of it!

I have fresh milk. And a bowl full of Nilla Wafers. And the routine makes me all the more grateful to be home.

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Filed Under: Gratitude

And Now – Mom Breathes

August 28, 2013 by Ellen Moore Leave a Comment

What a remarkable feeling to have everyone under one roof after such an intense hospitalization! And thanks so much to whoever decorated our door and mailbox!!!! Super cool! And sometime Brian snuck away and found awesome yellow butterfly sheets. Hope you sleep well in your own bed sweet butterfly surrounded by these butterflies! You done good Little Bug 🙂

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Filed Under: Gratitude Tagged With: surgery

Homeward Bound

August 27, 2013 by Ellen Moore Leave a Comment

We are in the car driving south toward home. It’s surreal! It’s all happened so fast and I just want every single person who helped us get through this – from docs and nurses to family and friends as well as co-workers and other business associates and especially The Big Guy upstairs – to know how eternally grateful we are for each and every one of you! Will write more later. For now, this is what sheer happiness looks like…

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Filed Under: Gratitude Tagged With: surgery

Gratitude

August 22, 2013 by Ellen Moore Leave a Comment

How do you begin to thank the people who save your kid’s life and then take such good care to be sure she gets through “the biggest surgery of her life” safely? For them, it’s all in a day’s work. For us, it’s everything.

I find myself so full of gratitude I just want to hug them, and I hope they can see in my eyes how much I appreciate all they have done for us. Of course, Dr. Miller and Dr. Theroux top that list. It also includes the ICU nurses and the respiratory therapists and the ICU docs and residents and even the lady who cleared our trash today. I am simply blown away by how amazing this team is and this entire hospital is. I keep telling them and they say they appreciate hearing it yet I don’t know if they really get how truly impressive they are.

Creating a strong culture in an organization is really, really hard. And this place seems to have it figured out. Every time anyone leaves our room, they ask if there is anything they can get for us. They ask that of each other, too. Sometimes, someone just pops in to ask our nurse if she needs anything. I look around to see if she called for help or if there is an alarm that signaled a possible need. I’ve finally figured out it’s just someone with a moment of time looking to be helpful.

I first learned that lesson from my husband. He used to walk through the room and ask if he could get me anything when we were first married. I learned to ask the same and realized that it’s a rare offer and that it builds such a strong connection between team members. He still does it – he’ll send me a text to say, “I’m on my way, can I get you anything?” It’s a step toward someone regardless of what else is going on with them.

Perhaps that’s what’s so impressive about this team. They step toward each other regardless of what else is going on with them. Even in rounds, when an attending doc wants to correct a resident, it’s done with care and respect and an educational spirit. That’s stepping toward another rather than trying to tear him or her down. I simply find the whole thing a blessing and am grateful to be in the middle of it as a participant observer.

As for Catherine, all this gratitude seems to be wrapping around her and serving her well. She’s doing remarkably well, they all agree, especially given how much blood she lost. Dr. Miller and Dr. Theroux each rounded on her this afternoon and were both impressed with how well she’s doing given the circumstances. (When have you EVER heard of an anesthesiologist rounding on a patient? She’s AMAZING!) Miller thought she was going to need more medication for BP support given her fluid loss. She’s only needed some additional fluid given and no medication yet. She still looks puffy and has lots of tubes in her so I’ll hold off on any pictures –  hey, you wouldn’t want someone to send out photos of YOU! 🙂 They’ve weaned her down to .015 Fentanyl and that’s so low a nurse actually did a double take when she heard it. They’re discussing pulling her off that entirely and switching over to only Tylenol to see if she wakes up more and shows more interest in breathing so they can extubate. Simply amazing to me. And I’m thankful. Cautious – yet thankful.

I also want to thank everyone who sent her cards via the e-service. We’ve received so many and I read each and every one to her. They are awesome and it’s so great to hear from so many of you – especially those I didn’t know were still following her story (like you Jen!). Some of the nurses were here when I read them and they started crying and said, “Wow! There’s so much love there.” That is so true and such a great feeling. Some of you may not have realized you could click on THIS LINK to go to a page where you can send and e-card. Catherine will receive it printed out and I can read it to her. It’s very cool and just another example of the small touches that make this place so incredible and create such gratitude in me.

Obviously, we’re hoping for another good night as Catherine starts to wake up more and more. The part that has me the most grateful, though? Her spine is super straight! Go back and look at the earlier post where I showed you the 78 degree curve. And then compare it to this…

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Like I said – how do we express gratitude for that?

Filed Under: Gratitude Tagged With: surgery

Good Morning!

August 22, 2013 by Ellen Moore Leave a Comment

Catherine had a good night last night. Her BP dropped some so they gave her some fluids. I have a feeling this is our new normal and the BP alarm is less alarming to me now. Well – somewhat. More concerning was that her temp dropped to 33*C so they put her in this warming device called a Bear Hug. Gotta love that! She warmed up nicely then this morning her temps are dropping again. Apparently this is sort of normal post-op behavior after losing so much blood.

Since she got enough blood to replace her volume three times, I got curious what that meant for you and me. Assume an adult has about 5 liters of blood – it’s actually a little less but that makes the math easier. That would mean an adult in her surgery who replaced the same blood volume would have had 15 units of blood! I’ve not confirmed that with a doctor so maybe some of the docs reading will correct this. Sort of put it in perspective for me.

The goal is to keep her comfortable and then get her extubated though everyone is clear that will happen in her own time. We more or less know what to expect now on that front. I was even joking about starting a pool for that!

Miller rounded early this morning and said she looks good. Her incision looks great he said as well. Docs will round in a bit and you can all just picture me standing on the other side of that great big wall of monitors. I will be the one smiling.

Filed Under: Gratitude Tagged With: surgery

Whew!

August 21, 2013 by Ellen Moore Leave a Comment

Just saw Dr. Miller. She looks great he said. He’s very pleased with the correction. Said her BP dropped some but nothing they couldn’t manage with fluids and no reaction like what they saw before. Said he is certain it was a reaction to a med. She got six units of blood because she bled a little more but he said that was manageable. He had to go a little slower as a result and it took a little longer than he thought. He was glad he got back in there because her spine was starting to stiffen and it was an optimal time to go back and continue. We agree!

He has every reason to believe she will recover as originally planned. I cannot express how thankful and relieved we are. Your prayers and support helped tremendously! Thank you. We are waiting to go see her directly in ICU.

Filed Under: Gratitude Tagged With: surgery

Sleep Helps Everything

August 17, 2013 by Ellen Moore Leave a Comment

There were a few moments early in the morning when all the chimes from the dozens of monitors on all the kids in the ICU all stopped at the same time. Those pauses amid the constant chimes were more noticeable to me than the actual chimes after a long restless night. I found if I focused on that rare stillness, I could actually drift to sleep. Thankfully.

Catherine had a pretty good night. Her blood pressure dropped for a good bit at one point around 2:30 AM so she had to come back up on the Epi drug, which made us head back to nearly original levels of the med, which was frustrating. Today, though, docs have decided to be more aggressive and they’ve turned off the Fentenyl (sp?) and are trying to get her to wake up so they can remove the breathing tube. She’s still on Epi to help her blood pressure stay up and when they titrate that down, her BP drops. Hopefully that will start to change as they allow her to wake up.

Will keep you posted as things progress today. Continued thanks for all the prayers, emails, texts, responses on this blog and anything else that lets us know you are with us in spirit. I see this huge network of God’s spirit holding us all together. It’s beautiful.

Love and hugs,

Ellen

Filed Under: Gratitude Tagged With: surgery

Tired. Late. Stable.

August 17, 2013 by Ellen Moore Leave a Comment

Hi everyone.

Thanks so much for your prayers and support. Today was long and hard. Imagine sitting in the waiting room for what you expect to be about 5-6 hours. We’d brought stuff to do – computers, games, magazines, books. I even thought perhaps I’d edit a video. It takes a little while to settle down from all the anticipation and stress of getting ready for the big  day. Kissing your daughter good-bye for surgery is never easy. Trust me. And settling down after all that adrenaline takes a little time.

So the first visit from the OR nurse an hour after we’d said our good-byes was pretty easy. They’d put in several IV lines and things were going well. The next visit – or maybe I’m already confused – she told us he started the incision at 9:28 and we could expect about four hours from then to be done. We quickly calculated 1:30 and she said to give it til 2 PM. OK. We were settling in for the day.

That relaxation didn’t last for long. On her next report, she told us Catherine’s blood pressure had dropped. “He’s just sitting there waiting on anesthesia to give him the go-ahead to proceed,” she said. She literally put her hands under her chin like a kid might wait for a bus. I don’t think it was 10 minutes later that she came back and said, “He’s closing.” She said it so casually. Like the operation was complete and it was time to go home.

“What do you mean, ‘closing’,” I asked. She explained that he didn’t think it was safe to proceed and he was closing her up and would be out to talk to us. Somewhere in all that she did say that he’d opened her up to the bone, so I immediately had a picture of my little girl with a back-length incision for nothing. Her spine was still crooked and she had a great big cut running the length of it. What a waste.

I couldn’t handle it. I walked away and quickly realized I didn’t know where to go. I was looking for a place to cry.

Eventually, Dr. Miller came out after closing her up. He said she looked good and was doing fine. Her blood pressure was back up after some meds. As he closed, he said, he wondered if he could have finished the procedure. At the same time, he was comfortable with his decision, as was I.

The real reason he closed was that they couldn’t figure out why her blood pressure dropped. It went to 60’s over 40’s and they like it to be something closer to 100’s over 80’s. They thought it was due to fluid loss so they gave her more blood. She got 2 units in the short time she was under and that didn’t really help. They gave her Epipenephrin (sp?) which got her pressure back up, but because the team couldn’t figure out why it dropped in the first place, he didn’t know how to treat it, so he decided with the bigger part of the surgery to go, he’d close her up and wait.

So, now she has a back-length incision. She’s on a bunch of meds for pain and blood pressure. And we wait.

He had cut through the skin, the muscle, fascia and connective tissue and exposed the full length of her spine. He’d drilled two holes into her pelvis. It seems fortuitous looking back on it that she dropped before he started to put the metal rod into her body. He told us this was the ideal place to have it happen, for had it happened when the rod was in and some of the wires attached, he’d not been able to close and that would have created a different set of problems. So, despite the agony and tears, I found gratitude. In all things, thanksgiving, right? To be honest, this time it was hard.

There are three lines of possibility for the drop:

1. Reaction to a med. She was on a cocktail for anesthesia and pain and any one of them could be the culprit.

2. She had a big seizure.

3. She had a reaction to a blood product. Could be platelets or Immunoglobulin(sp?) or blood itself.

They’re running all kinds of tests. We’ve had a lung x-ray, and EEG, visits from allergists and the nutritionist – in addition to the regular docs and nurses all trying to care for her. Anesthesia came in three times and read the five inches of Catherine’s medical book looking for any clues to help decipher the cause of the drop. She’s simply amazing.

And like much of Catherine’s life – and really all of life, I suppose – we’ll just have to wait and see.

In the meantime, she’s had some breakthrough pain which they’re managing quickly and well. She’s ventilated and on meds to keep her blood pressure up. They plan to try to wean her from those overnight. She lies a bit on her side right now and I got a peak at the top of her incision bandage. Maybe it wasn’t for waste. Maybe we needed this to happen for some reason. Dr. Miller thinks the remaining 2/3rds will be easier on her system because she won’t have to absorb all of it in one experience. Time will tell.

And as for timing – he’s hoping to continue chapter two of the surgery on Wednesday. We’ll just wait and see.

Filed Under: Gratitude Tagged With: cerebral palsy, surgery

Special Education

August 27, 2009 by Ellen Moore Leave a Comment

We just spent 4.5  hours in a special education mediation meeting. I can’t write about the details now, but let me just say that if I had all the money in the world, I would make it my singular mission to change the system in our country. Or at least in Anne Arundel County to get started.

I’ve written about Delrey School before, I think, but it’s worth it to mention again that in the world of special education for severely disabled kids with cerebral palsy, they are top shelf. They are consummate professionals who genuinely care about these kids – and not just the ones paying tuition for their school.  This is what I wrote to the team that helped us in the mediation:

You are each rays of hope in a system that is so broken it is disheartening. You each have a joy and radiance that grows from your souls and touches these kids and draws them out. You relentlessly find the one tiny glimmer of light shining from a kid and you work tirelessly to open that hole and let the light pour out so the world can see. These are perfect souls trapped in broken bodies, and you help their souls shine. It is refreshing to know that one candle can erase darkness. You are each candles. Your school shines so brightly with your candles and the light you open to the world in your students that it scares places who can’t possibly shine that brightly – much like it would hurt your eyes to look at the sun. Keep shining. On the days it’s tough – on the days you have doubt – know deep in your soul, at the very pit of who you are and what you do in the world, that you are brilliant. And each kid that gets to come through the halls of Delrey for even a moment is blessed and changed forever. Shine on, Delrey. Shine on.

Filed Under: Gratitude Tagged With: cerebral palsy, disabled kids, special education

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Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…

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