Good job team!!! Especially Catherine!
We’re trying to get Catherine off the ventilator today. She’s not breathing as consistently as she needs to so it’s taking longer than I hoped. It’s amazing to me what a frustrating cycle this creates in me. Maybe her, too. I really want to get her off though because I saw Dr Miller get quite concerned with how little nutrition she’s had and the effect that will have on wound healing. So now I have something new to think about. And we really need her off the vent so she can get some nutrition. Anyone popping in to read today – prayers for breath would be good.
A resident named the blog post today. They were holding rounds this morning and she was talking about how little Fentanyl Catherine is on and said something like, “For most kids, this would be spit in the wind, but because Catherine is so sensitive, it seems to be enough.” All the docs laughed at her “spit in the wind” comment and I told her she’d just named today’s blog post – whenever I got around to writing it.
I got to thinking about it though. Oftentimes, I think we may think we’re just spitting in the wind and, in fact, we find out that whatever we did was the perfect dose at the time. For example, my niece and nephew in Charlotte have been helping to make sure Sarah had a good week away from her sister. For them, I’m quite certain they had to do some things that seem minor and unimportant. For Sarah, though, they probably made it much easier for her to be away from us. They may think they were just spitting in the wind, yet I’m sure it was the perfect thing for Sarah at the time. Thank you Rusty and Georgia for being such cool cousins! And thanks to all the Charlotte family for taking such good care of her. We can’t wait to see her tomorrow!
And some friends of mine came to see me today. They may think it was a small thing to do. But it made dealing with all that’s going on both here at the H and in other parts of my life much easier on me. It was the perfect dose at the time. So, guys, thanks so much for making the trip!
Another example is when Dr. Miller’s assistant came to the ICU after Catherine had her reaction in the first surgery. She didn’t stay long – just enough to give me a hug. Maybe she walked away wondering if it was worth it. I can tell you for a fact – that hug kept me strong and was exactly the thing I needed to keep from falling apart.
And docs may think the Fentanyl dose is super small and spit in the wind. But Catherine seems to be pain free and alert enough to have been breathing for about 4 hours now, so she can get strong enough to breathe on her own tomorrow and hopefully they’ll pull the ventilator tube. She’s started some formula as well today and much of the fluid is coming off her body so she’s starting to look more normal. She’s on a micro dose of Epi to keep her BP up and the hope is that as fluid comes off her body, her BP will rise and the Epi can fall. These small adjustments may look like spit in the wind in the scheme of things. And I suppose they are. As far as I’m concerned, the spit dose is just right for now.
They just decided to start Catherine on a little Epi to try to get her BP to come back into a good range. Fluids haven’t been working enough and it bums me out a little. Her BP has been high 60s over midish 40’s so I understand though it’s still a little disappointing. They haven’t actually started the Epi. The nurse has it ready though watching for the orders. Maybe they won’t???
She’s also not even trying to breathe over the vent yet. I tend to think she’s regrouping after such shock to her body. Will hope for breathing tomorrow.
And now we know what to pray for tonight. In all things pray with thanksgiving.
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…
Like I said – how do we express gratitude for that?
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.
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.
They’re closing!!!! We will see surgeon in about 45 mins or so and I will send an update as soon as I can afterward. Not 100% out of the woods but oh so close….
Your sister is in the very best hands in the world – literally. I thought you would like to see a photo of them wheeling her toward the OR. They took her in at 11:01 and we will let you know when she is out with a super straight spine. Everyone here thinks you are amazing and the best sister in the world to Catherine. Couldn’t agree more Little Bear! We love you!!!!
I have found the way doctors round to be amusing. They all stand behind mobile computer stands that look a little like segweys to me. We can’t even see the doctors’ faces most of the time. The first day I asked them about it and they turned the screens. Today they seemed to have forgotten all that. It’s a wall of talking monitors 🙂