*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
Hi all! I figure you might be wondering how our little guy is faring after our hospital stay and I have to say that he is just absolutely amazing. It's like nothing ever even happened. I was definitely more traumatized by the experience than he was. His Grandmother and Great Grandmother (she's 87!) came in town for a week the day after he got out of the hospital (the visit was already planned). We played tourist for a couple of days and Rinat really enjoyed looking at the paintings at the National Gallery which I was happy to see. And then his Uncle Walt and Cousins Sam and Sara came and it was just a whirlwind of activity and fun. He, of course, loved all of the attention from Gma and GGma (and the gifts they brought too!). And I think Sam, who's 5, is like a hero to him. I could almost hear him think to himself 'Wow, I want to be big and strong like him one day!' as Sam picked him up and bounced him around. And then Sara, who is 18 months to Rin's 15, is just enough ahead of him in abilities and just ahead of him in size that he just kind of followed her around to see what she did and where she went and he could almost do the same. And he, of course, wanted to play with the same toys, eat the same food, and do everything else the same too. It was cute. And, of course, Rinat just loved having Walt here too who is great with all of the kids and is the same kind of parent that we are. He is laid back and just wants the kids to have fun and enjoy being with their cousins. The only unlucky thing was the weather. Gma&GGma came in town to see the cherry blossoms and it was just freezing cold and raining here for some reason. And 3 stir crazy kids made it seem like there's more like 10. Of course having 5 stir crazy adults in our house didn't help either. But we got to play lots of Sam's' new game of Uno and it was fun for everyone anyway. We made it to the zoo the day after Gma&GGma left and proceeded to get really sunburned on the first warm sunny day of the season and we had a lot of fun seeing the big orangutan on the O Line. Then the next day, Gpa Byron made it up to visit for 10 days and we spent time hanging out enjoying the kids. Then Walt and the cousins left and Gpa B stayed and we did some sightseeing (the Basilica of the Shrine of the Immaculate Conception a couple of days before the Pope came, the Air & Space Museum, another trip to the Zoo) and some just hanging out. To be honest, I was kind of exhausted and after dad hopped back on the plane to head home, I looked at my calendar and realized that there have only been 5 days of just the 3 of us in the last 5 weeks. No wonder I'm beat! It was a tiring but great month (aside from the hospital drama) and it was fun to have everyone in town. And let me tell you a little bit about our sweet pea who is just getting bigger and bigger every day. Well, he's still just a little small fry (10% in weight and 50% in height- it's like we created him ourselves!) but he is acting a whole lot more like a big kid. He is just motoring around like a maniac. I swear, he'll be running any day now. Peter took him on a walk around the block after dinner tonight and he was screaming for more as we dragged him inside to take a bath. And he is talking and trying to imitate what we say all the time now. The other day, I pointed to a watermelon and he tried so hard to say it too. It came out closer to "dadabedah" but it had the right number of syllables anyway. He definitely has 'cracker' down pat and now that I finally turned his car seat around and he can see me as we drive along, I can no longer sneak in a quick snack for myself on the way to somewhere because I hear 'CAH-KOO, CAH-KOO, CAH-KOO' from the backseat until I share my cracker with him. His new obsession is the ceiling fan on the neighbor's porch. I actually had to move his high chair so that he could see it as he eats because he kept trying to climb across the table to look out the window and check and see if it was on. His hand sign for it is that he points up, waves his little hand back and forth, and says "woooowooowowoowooo". It's kind of adorable. And he is such a big boy now that I gave him his first shower and he did great. We had been practicing for the last week or so by me pouring water on his head in the bath so that when I actually put him in there with the shower on, he just climbed right under the stream and laughed his little head off. Gosh I love that laugh of his. It's kind of like a deep down to the core chuckle that is so infectious. It makes you want to do whatever it was you did to make it happen again and again just so you can hear it. What can I say but that every single day is a joy- even today when he spent half of his music class screaming and trying to leave and the other half of it trying to steal the other kids' toys and then screamed because it was time to go. Ahhhhh, toddlers. I hope all's well in your life. -m