The past two weeks have been brutal for my little guys. And while the neurology team assures me there's been no "brain damage" to them, I'm fairly certain that my brain has been deeply effected. Caution: I'm writing this out more for my own personal processing than actually to tell what happened, so if you get lost, or things don't seem to flow just right...don't be surprised.
We had our 4 month follow up with neurology. I was so excited as we drove down, that I would have nothing negative to report. Aside from a cough that Austen had a few weeks before, the boys had been the picture of health. No seizures. The meds were working perfectly. We had been slotted for 3:30-4:30 and were out of the office by 4. They had decided to be proactive and up the dose of their meds slightly to avoid any breakthrough seizures.
Wednesday, I took Simon in for his well check and took the babies with me. The fabulous pediatrician asked how all the boys were doing and the twins smiled and flirted with her, cooing as I told her neurology gave them a gold star. Just a couple of hours later, as Rachel and I sat in my living room, I heard Austen crying from upstairs. I went up to grab him and after sitting down, he had his first break through seizure. I was remarkably calm and just asked Rachel to time it for me. Then shrugged it off-figuring we would see one or two as the boys decided to have a sudden growth spurt, and raising phenobarb levels takes a few days once dosages are increased.
The next day, Austen had 7 seizures and Carter had one. Friday held the same stats. I called their doctor and she informed me to increase their meds again. Now they'd be going from 7.5 to 30 mg. We ordered labs for a pheno level, and the boys had blood drawn from veins in their heads. Saturday was a seizure free day. HORRAY, we did it. We're over the breakthroughs. Sunday...4 more seizures for Austen. I knew that I had the twins well check scheduled for Tuesday, and hoped that by then we'd have better news. No such luck. By Tuesday, Austens personality was gone. He had seized 8 times Monday and was on his 3rd seizure before 9 am. My new friend and neighbor, Jenny, called another neighbor to come give him a blessing. Bryan brought over an adorable "get better" card made by 4 year old Kallie and gave him a wonderful blessing. We headed to the doctor. Carter passed his well check with flying colors. Smiles. and managing to poop all over Dr Gagner, which she laughed all the way through. ( I love this woman!) Then, a miracle. We found an ear infection in Austen's right ear. I've never been so excited to be filling a script for antibiotics. This is why he is so miserable. This is why he's seizing. We begin antibiotics. Another week goes by and it seems he's only getting worse. By Saturday I'm coming unglued. I haven't seen "Austen" in days and he just cries and cries until he seizes and then he sleeps, only to wake up crying and then seize again. Carter is also starting to seize more often. My brother Ben advises me to head straight to PCMC ER and demand to see the neuro on call. Brain damage could be possible with this many seizures, because he isn't having time to rest. This statement throws me into full panic mode. I start throwing things in plastic bags, forgetting that all the suitcases are in the closet. I lose my keys.The meds. My sanity. Chris drops me and the babies and heads to my parents to drop off Ava and Simon. My dad saves Easter for my kids. The ER team is amazing and boy do the boys perform. 4 seizures while in the ER. all while the staff is buzzing around them. "We're not sure we need to admit Carter" the doc says, and they administer Ativan to both boys in hopes that it will stop the cluster of seizures that are now every 2 hours on the dot. Just as she goes to give Austen his dose, he has a 3 minute seizure. About 5 minutes after Carter gets his dose, he begins to seize and turns BLUE. This is also known as Cyanosis. The nurse was amazing and jumps on him in lightning speed practically sitting on his face with the mask to apply "positive pressure" and force his body to accept the oxygen. It's only 2 minutes, but watching a blue baby every second is years. "Ok, we're admitting Carter now." The nurse, I can tell, is conflicted with the doctors wanting to send us to RTU. She assures me that we'll be the only patients for our nurse. We will have the attention these boys need. But I can tell she's worried.
The next day, I see why. By 10 am, just 8 hours after I watched my baby turn blue they are handing me discharge papers. "They are going to be fine." I am in such shock I just sign. How are they fine? They've seized two times that morning. Austen can't even hold his head up and is so out of it, that he's even more alien to me than before we came. I tell her over and over that he's not ok, and she keeps telling me that we're going to be just fine and to have a great Easter. I drag out leaving as long as possible, knowing another seizure is due at any moment. I'm given new med dosages, 15 in the morning and 30 at night. Here's some ativan --if they have more than 5 seizures, give them .5 tablet. 30 minutes after leaving, sure enough, Austen has another seizure. We head down to my folks and all take a much needed nap. I wake up in a daze and we have Easter dinner with my family. Carter seizes. We pack up and head down to Lehi to visit Chris's family. Ava and Simon were so excited to see Bryant. Simon was so also exhauted and slept for most of our visit. About 5 minutes after arriving, Carter seizes again --but this time, he turns blue and doesn't self recover. We all stand around in a frozen panic. Chris is holding him and I hear Becca urge him to help him breathe. My baby is frozen. Still. Blue. Something in my begins to crack, but I refuse to feel it. Now is not the time to freak out. Now is the time to call the hospital and tell them they were wrong about my babies being "fine" and see what we should do next. Chris gives 2 rescue breathes, and then...in the longest 2 minutes of my life, Carter begins to regain his color. he slowly starts taking breaths. He falls right to sleep. I call the RTU and am told we have to readmit through the ER. And that he needs to be admitted to the 4th floor. This, of course, is not a surprise. But I'm not ready. I know we have 2 hours before his next seizure, as I've been tracking them. We eat a salad. We help the kids find eggs. We form a plan to meet our friends Aaron and Keri in Salt Lake. They will take Simon and Ava overnight. Chris will came back with me and help me get to the 4th floor. Then, he will check into the hotel to hopefully sleep. 5 minutes before we reach the hospital, Carter seizes again. Turns blue. Becomes still. cold. lifeless. "BREATHE!!!" I place my mouth over his face and try to force air into his body. I try to remember Becca's caution not to breathe TOO hard, and panic that I'm forgetting something else. I wait another second and breathe again. I'm rubbing his chest and face ""BREATHE CARTER BREATHE!!!!!!" It takes 3 breaths, and what seems like ages for him to accept my air. Then, he simply turns his head as his face goes from blue, to grey, to chalk white.
Thankfully, we get the same ER nurse as the night before. She sees me and my massive stroller enter the hospital and requests to be assigned to my boys. This, I'm sure, saves them another RTU visit. She insists they get to the 4th floor. She fills in the new staff on last nights adventures and sets up oxygen. The NP comes in and starts asking me questions full of medical terms. Parts of me wants to punch him in the face. "Is he experiencing cyanosis?" I've had 3 hours of sleep broken up in 2 days. I look at him with massive confusion and he repeats himself. I finally have to tell him that I have no idea what he is asking. This happens a few times. "Is he turning blue?" Oh YES. COLD. BLUE.STILL. RESCUE BREATHS. I try to remain clinical. Objective. The lack of sleep is getting to me. Austen is screaming now. He screams for an hour. Then two. We try tylonol. Ear drops. Sweeties. Rocking. Music. A stroller ride. Finally, he seizes and the crying ends as his exhausted body gives into momentary sleep.
We are taken to the 4th floor. The boys are placed in cribs and hooked up to monitors. 2 doctors come in and start asking me to fill them in. In my mind I wonder if anyone ever reads the charts. Why am I telling this story again?!!? I'm so tired. Is there anything I'm forgetting? 4 am and I'm finally able to sleep. by 12:00, neurology has stopped by again, assuring me that everything is fine. The meds just take time. No damage is done. The doctors come in to talk to me about going home. Again, I'm confused. My baby was blue just a few hours ago, and yet they want to assure me that he's fine. My other baby is so out of it that he can't focus on your face when he's awake...and is also crying every moment he's awake. They try to assure me over and over that they are fine. That turning blue isn't going to hurt them. That I'm over reacting to what happened. I try over and over to tell them that we are not ready to go home. That I am fine handling seizures, but I'm not ok with
cyanosis no matter how common it can be. I want 24 hours of no seizing. I want the levels to be where they should be. I want my babies safe. I have 2 other kids at home. What happens if he seizes and goes blue and I am driving. What if he doesn't self recover? He will. BUT HE DIDN'T. but he will. BUT HE DIDN'T! I fight not to cry. Not to become one of those hysterical moms on reality tv. I finally give up. Luckily, the hospial's social worker that they assigned to us was in the room. Once the doctors left, I felt free to breathe. Tears came. I couldn't stop them, try as I might. It was an awkward moment. I could tell she was waiting for me to say something. There was so much I wanted to say, but I had no idea how to even form concepts. I felt like no one was hearing me. My baby looked dead hours ago. THREE TIMES. I am breaking a little every time it happens. She tells me that she will speak for me. she will tell them we are not leaving until they are 24 hours incident free. She assures me that I can call her for support. Chris leaves to pick up the kids from our friends home. He's going to stay with them. The next few hours go really well. Slowly, Austen is coming back to being himself. SarahJo stops by on her break and gives Carter some love and gives me some much needed company. A break from the hell. A laugh. I make some phone calls to my favorite people who I know will distract me momentarily and remind me that this is not forever. Austen has another night of screaming for 2 hours. two nurses patiently stay with me, trying to help me calm him. We finally get him to sleep. I drift off to sleep sometime around 2. the rest of the night, thankfully, is uneventful. I keep falling into deeper and deeper sleeps each time they wake me for a consult. an update. i can't stay awake. it's been 24 hours and the boys have been incident free. I feel so relieved. I tell the doctors I'm now ready, sure that they think I have overreacted about needing to stay longer. But I don't care. The only thing that matters is they are better.
I drive home. I snuggle my babies and we sleep all afternoon in our own bed. I love how good it feels to be home. I pack up the babies and the kids and take them to go play. Keri and Aaron meet us. I watch Carter fall asleep in his car seat after giving him his nightly dose of meds and start reading. I look up a few minutes later, and he's seizing. blue. he self recovers after a couple of minutes. I do my best to shake it off. I pack up the kids and head home. I nurse the boys to sleep. I lay down with Ava until she's asleep. I convince Simon that sleeping naked is a bad idea, because he might get sick. I tuck him into bed in his warm jammies. And then, it all hits me. I try to escape into the book I had borrowed. It's not nearly long enough. And then, the stress, anxiety, worry, fear, sadness, anger, all find me. It's 4am. I decide to pump since I'm up anyway, and manage to freeze 8 ounces. 5am, 5:30am...Simon's awake. He wants to play but by now I'm done. My body is begging for rest. My mind is spinning. I play until 6:30 and then lie down. He eventually gives up on mommy and plays with Super Super Duper.(His green latern toy)
Thankfully today has been seizure free. It's been full of smiles. laughs. snuggles. feedings. and my other kids must sense that i'm not quite right,because they've taken it easy on me. Simon is asleep in the hallway. wearing his favorite outfit--nothin but boots. Ava is on the bed playing endless games on the ipad. (Thank you steve jobs and toca boca.) The babies are resting. I've ordered pizza for lunch. I'm typing this out hoping that it will help me process. help me to deal .and help me to move on. Cyanosis-can be harmless. Cyanosis-can be normal. Cyanosis--will be my ultimate undoing .
