Just had rounds and they asked if we had any other questions. We told them these T-shirts pretty much covered it!
Just for fun Catherine decided to drop her blood pressure last night. Of course the staff was all over it. And they started questioning whether we would proceed today or not.
They gave fluids, and BP rose so they decided to give more. It’s possible she just drops when she’s in a deep sleep which she was last night.
I didn’t want to worry anyone so I held off posting until Miller came by today. We’re on! And they are taking her early. So we’ll go for Spinal Fusion Part II at 11 AM. I hear the sequel is supposed to be even better than the original. Let’s hope so!
Fly Catherine Fly!
Looks like all systems are go for Catherine to head back to the OR tomorrow. She’s scheduled for 1 PM, though they may take her as early as 11:30 if they can get schedules to align. Docs have done all they can to figure out what caused the anaphylaxis on Friday. Neuro and Cardiology have ruled out seizures and heart problems. And the anesthesiologist said her lungs are so strong they’re probably what kept her out of really serious trouble. So, the strongest hypothesis is an allergic reaction to some meds or blood products. Trouble is that they’re not able to isolate the culprit precisely. They have some strong contenders, but cannot know for sure. That means they’ll avoid as many meds as they can in the cocktail they used on Friday, though some can’t be avoided. And of course, they can’t control for the blood products. So, you know that quote that says, “Leap and the net will appear”? That’s sort of how this feels. Especially after hearing Dr. Miller’s resident round on Monday and say he just wanted to check in because he was in the OR with her when it happened. “She’s made a miraculous recovery.” “Miraculous?” I thought. I didn’t realize it was quite that serious. When I mentioned it to Dr. Miller though, he didn’t disagree. OK – We’ll be looking for that net!
Dr. Miller and Dr. Theroux (anesthesia) have consulted each other numerous times, and I’m glad we’ll have the same team in there with Catherine. They’ve worked together for nearly 25 years. They’ll be acutely aware of any issues and have a solid plan which makes me feel more confident. Though I promise you that every single time the OR nurse comes out to give us an update, we’re going to be hanging on every word.
I’m incredibly thankful that they were able to extubate Catherine yesterday and she has had some time to breathe on her own. It was amazing to watch, actually. The night the respiratory therapist came in to do a trial to see if she could breathe on her own, she tried three times and Catherine would start out OK and then stop breathing. It was so frustrating – and frankly incredibly disheartening – to watch. I asked her to try again. She said, “Well, she’s already failed three times.” I think she could see something in my face because she agreed to try again. And this time, she did something different. She created “a leak” in the balloon closing off her airway. I’m not sure I understand the physiology of how ventilators work, but as soon as she did that, I watched Catherine take a breath and I could tell it was HER breath – not a machine’s. Her belly just rose differently and I realized I do, in fact, know my daughter. “That’s her breath,” I said with excitement growing in my heart. “Good job, Catherine. Just keep breathing. You got this.” And sure enough, she did.
Every single alarm through the night woke me, though, and I jumped up to see if it was her respiration that was alarming. Often it was alarms next door or a med running out. Nothing that mattered as far as I was concerned. As long as she kept breathing, anything else could alarm.
It may be odd to read that I realized in the moment she took a breath that I do know my daughter. You have to understand. Since she was in the NICU, the nurses would say, “You know her better than we do.” She was only days old – how was that possible? They had all the numbers and charts. Her nurses at home watch her solely for hours. And because Brian is her main caregiver – and such a good one at that – I sometimes wonder if I really do know her. He’s able to read her subtle cues so much better than I am. But in the dim light of the ICU, I saw her belly rise and fall and my gut instantly knew. That’s my little girl breathing. And everything will be just fine.
I learned something pretty cool from one of the volunteers at this hospital. You can go online to the hospital website and send Catherine an e-card that they actually print and hand deliver M-F. I’ve not done it yet, but so many of you have asked if there is anything you can do so I thought this could be kind of fun.
I also just wanted to let you know how absolutely amazing this hospital is! The ENTIRE TEAM is simply wonderful. I’ve never heard so much laughter in a hospital – and certainly not in an ICU. I think that’s got to be good for the kids. In fact, when I walk onto the unit, I feel like it’s a place for healing rather than desperately trying to save lives. If you’ve been in other PICU’s, maybe you understand what I mean. This place just feels different.
Everyone – custodial staff to best-in-the-country doctors – smiles and says hello and has the best attitude. You know I’m in advertising, so I pay attention to things like mass communication. AI duPont’s tag line is “Your Child. Our Promise.” It’s everywhere – screensavers, posters, radio commercials. It’s remarkable how they live into that idea with every single interaction. They really care about the whole family and work to involve parents in the care of their kids. We even get to participate in rounds – and it’s not just lip service. Monday, when they rounded on Catherine, they talked about taking her off Tylenol. That’s all she’s on for pain. I couldn’t fathom her not having something in her body to ward off the pain from such a huge incision, so with a little concern about whether I’d actually be taken seriously, I said something. “Uh – she’s only out of surgery 3 days, can we please keep Tylenol on board?” Sure enough – they did.
I hope you never need a hospital for your kids. If you do though, I hope you can find your way here. It really is a special place and I endorse it completely. Because of that, and the incredible care Catherine has received and the top-flight docs and nurses and entire team, we head into the OR feeling like we’ve got a net. In a few hours, it’ll be time to leap.
Catherine has had a relatively uneventful day which you would think would be good. It’s been frustrating though because I was really hoping to be able to tell you they pulled the tube.
She breathed on her own with the tube still in place for three hours last night. Today I was getting really excited as she was coming up on an hour. Then at 54 minutes she didn’t take a breath and the ventilator kicked in to breathe for her. It’s not like it gives a little puff and she’s off in her own again. It just takes over and she has to start from scratch the next time they are willing to try. Usually they want to let her rest and it can be hours before they’ll try again. Like I said – frustrating.
The good news is that she is off the blood pressure med entirely and holding her BP up really well. She’s also off all pain med except Tylenol. We are trying to balance narcotics for pain and being awake to breathe. Tricky to say the least. She seems to be doing well on only Tylenol and I am amazed frankly.
So she’s on no meds – just needs to get off the vent. At some point they’ll decide just to leave her on til surgery. So far it still seems to be planned for Wed. I am sure we will get more info when Dr. Miller rounds tomorrow. Sundays are pretty quiet in the H typically. I remember that from bed rest with Sarah. They were among the hardest to get through then. Today it is sorta nice.
Hope everyone sleeps well. Pray for good breaths. Sure would like to see my little girl without the tube coming out of her mouth!
Sweet dreams y’all –
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,
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.
Dr Miller decided to close early because Catherine’s blood pressure dropped too low. She is fine now after some meds to bring it back up and she is heading to the ICU. They will spend the weekend investigating why it dropped as they do not have a clear reason now which is why he decided to close. He was about 1/3rd through the procedure. He is tentatively thinking he would try again Tues or Wed.
I know this is difficult to read. And I am keeping it short as we are heading to ICU. Will let you know more when we do. Until then – please see the title of the blog. Aptly named 🙂
Prayers are still good!
Ellen, Brian, Catherine and Sarah
Catherine is scheduled for 7:45 am tomorrow. She will be first and only scheduled case for Dr Miller. Thanks all for prayers and support.
Love and hugs,