*10:15- So here are the scariest words that a parent can hear from the doctor operating on her son as he walks into the room after several hours in the OR- “I need to talk to you”. Yup, his easy little no-big-deal surgery has turned out to be a much scarier experience than we had anticipated. I got all dressed up in scrubs and was in the room when they put him to sleep. I kissed him and told him I’d see him soon and I was confident that it would be quick and easy. Then the doctor walked me back to his little room in the ped surgery area and told me he’d come get me again in about an hour or hour and a half. I, of course, started checking my watch every 5 minutes starting at the hour mark. Then every 30 seconds after the 90 minute mark. And after then I was too freaked out to even read my book or do anything but stare at the wall and worry about all of the things that could be going wrong. And after almost 2 hours the anesthesiologist walked in and said those dreaded words. He told me that our sweet little baby had a reaction to the anesthesia called Malignant Hyperthermia (well, he said it was probably this). This typically presents itself as a high level of CO2, rapid heartbeat, tachycardia (is that the same thing?), high blood pressure, and finally muscle rigidity and it can ultimately result in death. Yes, DEATH. My heart stopped for a second until he assured me that the latter had not happened. Just thinking about the possibility makes me want to throw something at the wall as I sit here waiting. I just focused on this fact as he began to tell me what happened. Rin had actually only one of the symptoms of this reaction- according to the doctor, he had a very very very high level of carbon dioxide that he could not bring down via hand-pumping oxygen into him. So they had to remove the small tube that they had inserted for the surgery and intebate him with a large tube. And I think maybe they gave him some drug too but my memory is kind of hazy since my mind was going a mile a minute. It is really rare to have this reaction so the anesthesiologist is calling NIH to seek their advice on how best to treat him- I think they have some kind of national database or something.
**11:00- So the operating doctor just came in and said that he doing well and is sedated and will remain that way for 24 hours and they will send blood to the lab every six hours so that they can make sure that the toxins are getting flushed out and his body is getting back to normal and they will keep the tube in for this time too. Poor sweet baby. And now we are waiting for the anesthesia to wear off before they come and get us to be with him and they are checking him into the Pediatric ICU in the meantime. We will stay with him all day and I guess I’ll send Peter home at some point to get me some clothes and toothbrush so I can spend the night. And maybe some food if ever feel like eating again- right now it is most definitely NOT an option. I feel like something bad might happen if I tried to eat. Sooo… that’s where we are as of now. I will update at the bottom of this post as we find out more and finally get to see our little pumpkin. Love to you all. –m ps the cherry blossoms are amazing right now. Check ‘em out online or call in sick to work- they won’t last long!
11:45- Still waiting. Our nurse just went and checked on him and he seems to be doing fine. There are still 2 anesthesiologists in there to monitor him and a respiratory doctor too. At least he's been well looked after. As are we.
2:45- So we just spent a couple of hours down in the recovery room with Rin waiting for a room to open up in the ICU. Now one is open so I am waiting for them to transfer him and get him all set up so I can sit with him again. Sweet sweet Ann has driven up from Richmond to be with us and help if she can. It is so nice to have a calming presence in addition to Peter who is not exactly, um, what I would call calm in general. He woke up once and it totally scared the shit out of me. He started flailing around and swallowing (because of the tube) and trying to figure out what was going on. The anesthesiologist was actually sitting right there actually so he yelled to the nurse for a somethingorother bolise, loaded up a syringe, and he quickly passed back out. It’s the first time I cried.
3:30- And now we are safely ensconced in the ICU and everyone is really nice and Rinat seems to be doing really well. They are just going to keep an eye on him and make sure it stays that way. They are moving him into a bigger bed while we wait here. I guess I’ll send Peter out in a while for supplies. I am not anticipating any news anytime soon, but I’ll update here when there is anything new to report. We’ll let you know.
7:00pm- Not really anything new to tell you. Ann is helping us keep our sanity and it's nice to have another person here who has no qulams about charging up to the nurse's station and telling them to come attend to him. Peter, as you might guess, is just a little freaked out about the whole thing. Rin keeps coming out of his sedation and flailing around which is scary but otherwise he just lies there looking like he's sleeping peacefully. His vitals are fine and they are thinking they will try and extebate him in the morning (take out the breathing tube). They will have to wake him up for a while before they do it though to make sure he's ready to breathe on his own. Talk about flailing- they're going to need an entire team to hold him still and keep him from pulling out all the things he's hooked up to. I don't anticipate that it will be a whole lot of fun but I'm telling you that the sound of him screaming will be the sweetest sound I've ever heard. You may be able to hear it all the way from where you are. Oh, Peter just poked his head in here (the parents lounge) to tell me that he's flailing so much that the may take it out tonight. Listen for that Kazakh war cry! And thank you all for the sweet comments so far. Rinat and we are so lucky. Love to all. -m
10:15pm- So Ann, Matt, and Peter are still here hanging out with me but I think they are going to pack it up for the night while I stay here and hold down the fort. Rin is still doing well. They finally got him to stay asleep but then his blood pressure dropped so they are going to drop down the meds to try and bring his pressure back up so I hope they will soon find a happy medium and I can catch at least a few minutes of sleep tonight. We shall see. In any case, they are thinking they will try and take him off the tube in the morning (they decided not to tonight) so Peter's headed back here first thing so he won't miss the excitement. We'll let you know how it goes! -m