Luke had airway reconstruction surgery (LTR) on Tuesday morning, so I wanted to update everyone with the details of the past few days.
Luke came out of surgery fine. The ENT surgeon did what he wanted to do and feels confident that the reconstruction will enable Luke to breathe without his trach when we get ready to go home.
The first night after Luke’s surgery, his heart rate started trending upward. Normally when he is asleep and or/sedated, his heart rate will range in the mid 70s to mid 80s. Throughout the night, his heart rate started rising. By the next morning, his heart rate was staying in the 120s. Over the next two days it had elevated to the 130s and 140s, occasionally hitting 150s. There have been a couple of theories for why this has been occurring. First, we were concerned that Luke was not adequately sedated underneath being paralyzed (how freaked out would you be if you were three years old, awake and in the hospital but couldn’t move??). We’ve been having trouble finding the right cocktail for sedation. The doctors have been afraid to add different medications to what he had already been getting for sedation because of his low blood pressure. Second, we always worry about infection, because Luke’s first sign that he’s got an infection brewing is increased heart rate.
We’ve also worried about his substantially lower o2 saturations. He normally ranges in the low 80s when awake and high 80s when asleep. He’s required no supplemental oxygen except when coming out of anesthesia since April of 2010 after his second heart surgery. Luke has been on supplemental oxygen since he came back from the OR on Tuesday afternoon ranging from 30%-80% (21% is room air).
Yesterday, Luke had a much better day than he had the few days before. Early in the morning his heart rate started trending back down and hung out in the 90s to 100s all day. Saturations have been pretty much the same at high 70%s-low 80%s, but the amount of supplemental oxygen he’s been getting has varied, mostly slowly increasing over all over the last few days. We are told that it is likely that Luke’s body doesn’t really like the positive pressure of the ventilator, and that’s why he’s require more supplemental o2 than usual. We hope that when they extubate early next week that his o2 sats will return to normal without the need for extra oxygen. So we’re riding this part out, hoping and praying that it truly is that simple and it will resolve itself.
Last night, my mom stayed with Luke at the hospital, and David and I went to the hotel together to get some much needed rest. My mom called at about 5:30 this morning to tell us that while they were suctioning Luke (with him on the ventilator, suctioning is a much more complicated process) he de-satted to 47% and his left lung collapsed. When we got to the hospital this morning, they were bagging with an ambu bag and suctioning again. He did much better this time, but it was a pretty exciting half hour. After a lot of suctioning, repositioning, and meds, Luke is resting now. His heart rate is coming back down from the 130s and is hanging out in the 110s right now. He’s satting mid-high 70s, but is on 75% supplemental oxygen. Blood pressure is still lower than normal, but not too concerning at this point.
We just talked to the Attending physician. He told us that a collapsed lung is quite common with kids who are paralyzed like this for any length of time. What happens is being paralyzed keeps Luke from mobilizing and clearing his secretions, so despite our best efforts the secretions can get stuck in the lungs, making them too sticky, then the air kinda goes out of them. The Attending also said that this is something they usually see post-op day one or two, not five, so the fact that he’s fought it off this long proves just how tough he is. The plan for getting Luke’s lung better is to keep him on his right side and back as much as possible, start IPV treatment, which is a machine that blows air into the lungs to mobilize secretions and inflate the lung, and to do lung conditioning with the ventilator. The good news is that we’ve suctioned out a whole lot of gunk today, and the Attending already hears air movement in the left lung. Knowing these things helps us put in perspective the hazy left lung on his morning x-ray and the low o2 saturations - when you’re only moving good air with one lung, your saturations tend to go down. We’re concerned, as you can imagine over this development, but we’re hopeful that the treatments they have put into motion will help.
Thursday night, the team decided to take Luke off the Vecuronim (“Vec” - paralytic) drip and let him move a little bit to get a bead on how comfortable his sedation and pain meds are making him. Instead they have been giving him a Vec bolus every two hours or so. It took until yesterday to really see a change. Yesterday afternoon, David, my mom, and I were all in the room when Luke came out of it enough to respond to our questions. “Luke, doe it hurt?” Shakes his head no. “Do you want your blanket?” Nods yes. “Are you scared?” No. “Do you want to go bye-bye?” Emphatic YES! It felt so good to have him respond to questions, and good to know that he hasn’t been in pain that we know of. Yesterday evening he was able to tell me he was hurting, and we were able to give some extra pain meds immediately.
Yesterday his nurse was very concerned again that Luke wasn’t comfortable underneath the sedation and paralytic because every time the Vec would wear off, he would toss and thrash and we’d have to hold him still (so his breathing tube won’t come out) until we could give him more Vec. After debating all day, the Fellow (I believe this is a doctor that ranks in between a Resident and an Attending) came in and told us that they had decided that his pressures have been okay enough to start him on Methadone (pain) and Valium (sedation) to bridge that gap that keeps opening up between doses of Vec, Fentanyl (pain) and Versed (sedation). The Methadone and Valium will take awhile to reach their full strength in his body.
Earlier in the week, the CV-ICU ran out of beds for the heart kiddos. Since Luke’s issue this time around is not primarily cardiac, they decided to move Luke Thursday morning to the general pediatric ICU. We were upset about moving, and generally feel exiled, but so far I have been very comfortable with the care he’s been getting. We’ve had some dynamite nurses and I am very impressed with the Attending physicians.
I have NOT been quite so impressed with the team of ENT residents. Yesterday morning before 7:00 (about 20 minutes after we had gotten him settled down from a bagging/suctioning session, losing an IV and sticking four times for a new one, then getting an x-ray) the team of ENT residents came in and started poking around looking at Luke’s surgical dressings. The leader told me that they were going to take out the penrose drains from both incision sights. I was expecting this, but as they worked, Luke was stirring and thrashing some - obviously awake underneath that sedation/paralytic, and not one of them said a word to him. They said nothing to soothe him or tell him what they were doing. They were surrounding his bed so all I could do was tell him I was still there and touch his feet from the foot of the bed.
After they left I talked with his nurse about how upset that made me, and she encouraged me to talk to the ENT department about my feelings. I planned right then to talk with Dr. McClay next time I saw him, but then saw the team walking by our door, so I asked the team lead (he might be a Fellow, I don’t know for sure) if I could speak with him. The rest of the team bottlenecked at our door. Enter Mamma bear. I told him that I know that they’re surgeons, but Luke is not under anesthesia. He is awake and knows what is going on. He’s scared and so am I. When they come in to treat a patient, they need to talk to him and soothe him, at the very least tell him what they’re doing. They need to treat him like the scared three year old he is instead of a specimen. The Fellow had a very surprised look on his face (and maybe even a little shame). He thanked me for bringing that to their attention and apologized for acting that way. I don’t remember everything I said, but I definitely teared up at the end of my speech. It was a little out of character for me, and part of me can hardly believe that little shy Rachael had the pluck to do it. I don’t know if they will change the way they act around other patients or not, or if they just turned the corner and laughed at me, but they did the same thing to Luke after his LTR last year, and I wasn’t going to let it go a second time. I knew I would regret it if I didn’t say anything. Earlier this morning, one of the team came by to examine him, and he was much better. He told Luke he was doing a good job and said some other soothing things as he looked at his dressings. Maybe my words did help them realize that their behavior was unacceptable and they need to learn some compassion. I hope so, for our sake and for all the other little kids they treat in the future.
Well, I know that’s a long update, but writing it gives me something to do besides sit and wait. It’s cathartic for me to get it all down, and it helps me remember the details as I’m Luke’s medical historian.
Please, please, please continue to pray for us. Pray that the treatments for Luke’s lungs help re-inflate the left lung and bring it back to full capacity. Pray for him to be comfortable during the remaining two days that he will be intubated and paralyzed. Pray that Luke will not get any new infections and that the antibiotics treat the minor one that he has. Pray that Monday’s bronchoscopy and later extubation go extremely well and that Luke will get to go home in the middle of next week with no trach. We appreciate your prayers for strength and endurance and peace for us as well. We feel very loved and supported, but waiting and seeing is a hard thing to do. Blessings to all of you.
Rachael, David, and Luke
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