On Friday we arrived at the hospital at 9am to check-in for the bear’s surgery. Sonzee was visibly upset due to not eating, so Sam was walking around with her while I took care of her admission. We went up the fourth floor and by 10:30, we were back in the pre-op room. They took her vitals; she received Osito a tiny red beanie baby bear. Things were going smoothly and we were just waiting around. Sonzee had a little stint of spasms around 10:45, and then again around 11:20. We were told around 11:30 that the surgeon was running behind and it would be at least another hour, so we asked if it would be possible to get some food into her. After speaking with the anesthesiologist, it was decided we could start her on IV fluids.
It always takes a minimum of three attempts to get into Sonzee’s veins; it is just how it goes. After multiple attempts, and two nurses, she was finally set up at 12pm. I made sure multiple times that they were going to administer straight sodium chloride vs the dextrose 5 bag, as she is on the ketogenic diet. Our neurology team made it clear that even if I tell the nurses about the ketogenic diet, and they act like they understand, I shouldn’t trust anyone’s word, and so I peaked at the bag myself to ensure it was the correct one. Around 12:05, they began to administer the fluids. I was holding Sonzee at this point to attempt to calm her down because she was clearly uncomfortable, but we decided shortly after I took her that it would be better if Sam held her since I just stopped pumping and she could probably still smell breastmilk.
At 12:10pm, she started to cough. She looked panicked, she was clearly having problems breathing, but I was assured it was nothing, and it was because she was upset. (She was not that upset to cause this type of coughing). Another 2 minutes of her coughing goes by and she is now having large amounts of secretions come out of her mouth. She suctioned her mouth. I am visibly upset, the nurse is staying right next to us, and she tells Sam to place her on the bed. He does. I ask her if we can turn off the IV, and she reassures me it is just water and that this is not due to the IV. I was doing my best not to be combative, but I made it clear this was not normal behavior, and while I was not arguing to the fact that it was straight water, clearly something was wrong with Sonzee.
Thankfully, an air pocket was found in the IV tube, so the pump began to ring and the nurse was forced to work out the kink. Over a couple of minutes, the IV was turned off, and she started to calm down, and had less coughing. Sam decided it was a good time to run downstairs to grab a quick snack as we had not eaten and were waiting for her to be taken back. He left, the kink was fixed, and the nurse turned the IV pump back on. Within a couple of seconds her coughing began, I was repeatedly telling the nurse this is not normal, she continued to reassure me, and as a peace offering, decided to put a pulse ox on Sonzee’s foot so we could see the amount of oxygen in her body as well as her heart rate. After a couple of minutes her oxygen dropped to the 70s, there was foam coming out of Sonzee’s mouth and I am pretty sure I screamed to the nurse, "this is not normal, you need to do something". I ended up walking out of the room as the oxygen bag was taken out and I am pretty sure the “code blue pre-op room 1” alarm must have sounded because within 1 second there were 20 people standing in and outside her room. I tried to text Sam and give him a warning that they were taking the oxygen out, but he did not read the text and when he walked through the pre-op doors, all he saw was the chaos.
Everyone was trying to blame her current state on a seizure. I was adamant this was not a seizure. I was continuously telling everyone that I was not trying to argue, but while they might be new to Sonya and seizures, I knew this was NOT at all seizure related. Her stomach was distended, her lungs sounded tight, they rushed in a chest x-ray, and shoved an NG tube down her nose into her stomach to release the air/pressure that was inside. That was an immediate help, but at this point, she was just lying there. There was no movement.
Her surgeon was the only person willing to listen to me that this was not due to any seizure activity. I had spoken with my dad who is a doctor and he asked how many cc’s of fluid were given, I was not sure at the time, but he told me if it was less than 100cc then it would be fine. I went back to the nurse and asked, and they said it was 150cc’s. I said, I think that is the problem, and I was met with all 20 people telling me this was appropriate for a baby Sonzee’s size based on a calculation (which I will find out which calculation they used because it makes zero sense with what I know her weight is and what my dad says is the recommended dosage). No one listened to me.
We were transferred to the ER, and she just laid still on the gurney. Her body was beyond pale, and her lips were a greyish/blue tinged color. I get it now what people are referring to when they ask if lip color has changed. She looked so awful; I took a picture and could not bear to look at it. It made me sick. We got into the ER and the ER doctor comes in and talks to me as if this is my first go around with seizures. He starts to tell me that it is possible Sonzee is having sub-clinical seizures that we might not be able to see, I retort back with “You mean status?” I think he was taken back when I said those words. He said, “Yes”. He then continued to tell me that he just spoke with neuro and they want to give her Ativan to take her out of the seizure. At this point, Sam almost punched him in the face, I told him to sit down and be quiet or get out. I told the doctor, we were not doing that, but I would be more than happy for her to have an EEG and if it showed she was actually in status, he could give it to her. He said, “Why are you against the Ativan”, I said, “Because she isn’t having subclinical seizures”. He said, “Well I can’t just order an EEG, she would need to go to the ICU for constant monitoring”. To which I replied, “Okay, then put her in the ICU”. He goes onto to explain that usually Ativan is just administered so as not to waste the time it would take to get her hooked up to the EEG. I said, “Well until you show me she is having a seizure, you aren’t giving her anything.” I am pretty sure he did not realize I know a thing or two about seizures; he walked away, I am sure to make a phone call.
When he came back, he listed all of the tests he would need to perform since I was not willing to give her the Ativan. I am pretty sure he was not so excited her blood work indicated she was sick, not saying he wanted her to be sick, but it was not helping his case. He had them do urine cultures with catheters, he had them drawing blood out of her arms, they put in another IV, she continued to lay there. We were adamant this was related to the IV and the fluid administration; everyone else was blaming it on a seizure, or they would simply say, “Well, we just don’t know what happened, it’s hard to say”. I know they have to do that to protect themselves, but it can be quite frustrating to deal with. We wanted to try to feed her; the poor girl still had not eaten. I kept asking for an NG tube if they were not going to let me feed her by mouth. We were told for that they would need to do more x-rays of her stomach and lungs in order to make sure we could place the NG tube. Neither of those tests was ever done. Finally, around 3:15pm after all of the poking and prodding, the bear began to come back to life. We begged to give her a bottle, by 3:30pm, she was finally taking one.
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