I had planned healthy meals. I ordered groceries. I was making mason jar salads all week with lots of yummy toppings and homemade dressings. I was going to meet my protein goals. I had planned to start PIYO. I planned yoga and gym days. My PT cleared me for a couple days of cardio a week- the bike and the elliptical. I was excited. I had a plan. But apparently it wasn't meant to be.
Owen had surgery on April 9. One week ago today and here I sit on the pulmonary floor of the hospital, not haven't gone home yet after a pretty intense week here. What started out as a routine VEPTR expansion turned into one of the scariest experiences we have had around surgery.
Owen's surgery began at 3pm on that Thursday. It was late and we were tired from waiting and him not being able to eat and us not wanting to eat in front of him did not help the whole ordeal. We met with the docs and the anesthesiologist that I have issues with was the assigned attending. She and I got into it about something which was not how I needed to start surgery but I've taken care of that and she won't be out anesthesiologist again. Already the day was pretty crappy.
The surgery took a long time. 2 hours of positioning. Usually Owen is able to be placed on his stomach with the use of foam. Not this time. When they flipped him to his belly his lung capacity went from 120ccs to 40ccs. Surgery had to be done with him on his side. This was the first time that happened.
Surgery took a total of 3-3 1/2 hours. I thought there might be an issue with extubatation when it took a really long time between when Dr. Campbell came and said things went well and when the nurse came to give us an update. Apparently, they were able to extubate but they needed to put a trumpet in (a small breathing tube through the nose that protects the airway) and he hadn't woke up yet.
We were brought back to the PACU and we tried to rouse him. It took a really long time for him to flutter his eye lids. He also moved his arms a couple times. He didn't speak and he didn't really wake up. Anesthesia came and spoke to us and said he should be up. They didn't use so much that he would still be asleep. We told them this was unusual for us, by now Owen would be asking for chocolate cake. No one was worried. Except us.
They moved us up to our room on the surgery floor at 930pm. Owen still wasn't up. We tried to wake him. His eye lids would flutter. He would move a limb.I remarked that he looked swollen to me. Everyone said positioning. We told them this was an unusual recovery. No one was worried. Fine. Nick and I went to bed. At 3:30am Owen woke up and said "mommy, I love you." I felt a ton better. Ortho stopped by at 4:30am and told us from an Ortho standpoint we could go home that day. It was 430am so I didn't argue but at 6:30am when they said the same thing, I told them he was on 3liters of oxygen and we were not going home.
Owen slept all day Friday. He woke up a couple of times. He spoke to us a little. He might have tried to drink or eat a little. Mostly he had pain meds and slept. I pointed out that he was swollen. He woke up a little Friday afternoon and spoke a bit and then knocked out. I figured surgery was hitting him really hard and the sleep was needed to heal. I told them by now he would be chattering away. Again they asked, did we want to go home? No, I said. We need another day.
Saturday was a lot of the same. He woke up a little. He had to have scoli films and a CT scan. We gave him all his meds right before so that he would sleep through the CT scan and also to combat pain from moving around and stretching during the scoli films. He had the tests had a period of time where he was awake and seemed himself and I debated going home. But something was nagging me to stay. They asked if I wanted to go. I said no. I told Nick, when we go home we always take a little step back and I don't think a step back from where we are right now is safe. He said okay. He trusted my gut, even though both of us were dreaming of a good night sleep in our bed and a relaxing weekend at home.
Thank you God for my gut and thank you for watching over my baby.
The nurse let Nick sleep in the room with Owen and I. O had fallen asleep at around 6pm but I chalked that up to a big day. He had the scan and films. He talked a bunch. He managed to eat some chocolate pudding and keep it down. Eventually, Nick and I fell asleep. At 1:15 am, all of Owens alarms were going off. While on 2 liters of oxygen, Owen was desatting into the 60's. Owen wasn't breathing. He still had a heart rate but he wasn't taking breaths.
We began frantically trying to wake him. We turned his O2 all the way up. The nurse was calling Ortho (Ortho?). Nick and I were hitting him. Wake up Owen. Wake up. Owen breathe. At some point in the next minute or two while we were yelling at him and hitting him, he began to breathe. I cannot tell you how long it went on. It could have been 3 minutes, 2, 6. I don't know. It seemed an eternity. Seconds lasted minutes. Owens breaths were labored, shallow and he had a lot of retraction his neck. It looked as though he was hiccuping to breathe. It was all wrong.
We were still in Owens face. His eyes fluttered open but his eyes were rolled back in his head. Ortho came. They had no idea what was going on. The nurse was on the phone. I was getting angry. I yelled at everyone. In between I would try to get Owen to talk to me about his twin. I thought Caleb could rouse him. I said "no one is doing anything. Why are you all standing around." They told me they called pediatrics. I lost it. My kid is sitting there with his one eye open and rolled back in his head, he looks brain dead or in a coma and they called pediatrics???
I told them I am a lawyer and a med mal lawyer and I want everyone in this room now. The nurse said she called them in the ICU and they would come when they could and I told her to call a code now. She had called for assistance but by hospital policy the level of assistance she called meant the ICU has 30 minutes to respond. This fact becomes quite interesting later. Anyway, I told them that my child stopped breathing and he looks like he is in a coma. Get the ICU or anesthesia or someone else here now.
And she did. One minute later, 20 people were in the room. And I felt a whole lot better.
They all began moving, checking oxygen and reflexes. Looking in his eyes. Talk t to him and us. They thought he wasn't metabolizing the oxycodone well. They thought he was basically overdosed (although at the right dosage- just that it was having the effects like an overdose). It made sense. They gave him narcan. Narcan is the drug that they give drug addicts to undo the effects. Narcan works quickly. And they gave it to Owen and he opened his eyes and made eye contact with me and Nick but immediately his eyes rolled back and he went non-responsive again.
That wasn't the response they were looking for. They decided to get a blood has on him to test his CO2. He opened his eyes a couple times. He moved one leg. They said it was probably just the narcotics but that they would be back in an hour with the result of the blood gas and to check on him. They said sleep. He would be okay.
Two hours later they woke us up. His CO2 levels were extremely high- 130. A normal persons number is 45. They needed to do another blood gas. They did it right there and the results came back 5 minutes later. Still 130. They said "pack up, he needs to go to the ICU a now."
Within a half hour were were in the ICU. We didn't know then but they thought he was goi t to have to be intubated. They tried the bipap first and after playing with the numbers they were able to get his CO2 number to start to decrease. When the number hit 90, I felt the tension leave the room and the docs began to smile.
It was quite tense before that.
Apparently Owen's bicarbonate level showed that Owen had been chronically retaining CO2. His levels showed that his kidneys and liver have been compensating for elevated CO2 for some time. This isn't something we knew. We have had sleep studies done and while Owen shows and elevated level, he also shows he can expel it. Or so we thought. It dawned on me during these conversations that Owens last sleep study was done while he was in the hospital coming off bipap for pneumonia and RSV, so it's quite possible it wasn't an accurate study since he had been blowing off his CO2 with the bipap that hospital stay. Needless to say there is another sleep study in our future for an accurate baseline.
CO2 buildup and levels like Owens cause acidosis. Respiratory acidosis is when there is too much carbon dioxide in the body. CO2 is an acid. Other names for this are hypercapnic acidosis and carbon dioxide acidosis. The symptoms are sleepiness, lethargy, hallucinations. If it gets bad it can cause cardiac arrest and death.
About that cardiac arrest. The 30 minute response time was bothering me. It bothered me that they have that long to respond at that level of call for assistance which is an elevated call. It's the call below code. I asked the ICU nurse, I said if we were home, what would we have done? I asked, what if the ambulance took 20-30 minutes to get there? What would have happened and she said "he would have went into cardiac arrest" and that we would have had to start CPR immediately.
All of that still bothers me. If I had taken him home, he could have died. If I hadn't demanded a code, he could have went into cardiac arrest. I don't know CPR.
Everything happens for a reason right? I like to think that we didn't leave the hospital because this was supposed to happen there so Owen didn't die and we have learned a lot about Owen since. I now have a list of post-surgery demands that I didn't have before- ICU, bipap, lasiks for fluid retention, bicarbonate and blood gas monitoring.
About that lasiks for fluid retention. Owen was puffy all week. I said it over and over. Finally, the attending in the ICU said "mom, is he puffy to you?" I told her yes and that I had been saying it all week. Up until that point, Owen could not be taken off oxygen. He would immediately desat. The attending ordered one dose of lasiks and he peed 1 liter of fluids. After that he no longer desatted when removed off the oxygen.
We go home tomorrow. We have some new machines. A bipap for nighttime and IPV machine which is like chest PT inside the lungs. We are trying a new med to help with secretions. It's an aggressive home therapy plan. But the Pulmonologist here is hopeful it will encourage healthy tissue growth in Owen.
The morals of the story- go with your gut, you are the best advocate for your child, when your kid stops breathing push the code button behind the bed and feel no shame in doing it- some rules are meant to be broken, you are your child's best doctor and nurse, be adamant when you see things aren't how they should be - post anesthesia behavior, fluid retention. Speak up. Make them write it down. If shit gets cray- get a copy of the medical records from your stay including operative report and radiology reports. Make a list of what should go different next time and insist on it. And if you don't like the care you are getting from one of the docs, you don't have to deal with them. Speak to a nurse practitioner, your treating physicans, and lastly patient relations if need be.
