I do not know really how to start this. It is my inclination to make everything a big joke. Coping mechanism, maybe. A hold-over from when I was a kid and my dad was dying and it was far easier to crack-up than break down.
It is a well-established fact now that I am good in a crisis. I keep a level head, I make reasonable decisions (as far as a layperson is capable, given the information available). It is one of the reasons Michael and I work so well together. I am steady and stalwart in the storm, allowing him the space to freak out a little; and during the calm, when everyone is safe and I have one way or another returned us to shore, that is when I start falling apart.
Everyone is safe now. We have redeposited in our home, relatively no worse for wear. My veneer has started to crack a bit. Crying in the parking lot of Natural Grocers and the aisles of Joann's. Keeping my nightly vigils, counting my little chickies again and again and again. I'll be okay. My heart just needs to catch up to my brain. Everyone is safe again.
Tuesday night, Michael and I went to bed at around 12.15-12.30. I haven't been sleeping great, due to my 112-year old cat's vocal opposition to the cold and Daylight Savings Time.
At 3.15ish, I heard Tula whimpering.
It is weird that I heard it because our room is clear across the house, and Michael keeps a box fan blowing on him. Mom Hearing, I suppose, because it was like the little sound was broadcast directly to me.
When I get in there, she is on the floor next to her bed. This in and of itself is not unusual for her, as she sometimes likes making pallets of blankets and "camping" out on the floor. My first thought is that she is having a bad dream. I attempt to soothe her. She is crying and thrashing a bit. After a minute or two, I realize her eyes are open. Maybe a night terror?
I turn on the light and go get Michael.
He is already awake, having heard her, too. Michael scoops her into his arms and sits on the floor. She is scratching in jerky, uncoordinated circles, her hands shaking. Into the band of her underpants, where the adhesive of the insulin pump (Omnipod) starts, like she is trying to knock the pod off. She does not have the Continuous Glucose Monitor (Dexcom) on because she knocked it off earlier. We could have reattached a new CGM, but it would not connect with the pod, eliminating the possibility of being in automated mode. We needed to change the pod in the morning anyway, so we decided to hold off.
Crash course in how the Omnipod and Dexcom work together: Dexcom constantly tracks her blood sugar. It takes a reading from the interstitial fluid every five minutes. It sends these numbers to the Omnipod. The Omnipod is what delivers insulin. If the Omnipod gets the message from the Dexcom that Tula's blood sugar is high and trending above goal range, it will adjust insulin delivery to prevent dangerous highs. If the Omnipod receives the message from the Dexcom that Tula has a low blood sugar, or is trending down, it can independently suspend the basal (background) insulin to prevent a dangerous low.
If it is in manual mode, the Omnipod continues to give the preprogramed portion of insulin until a human goes in and tells it otherwise.
We have tested Tula's blood sugar. She is low--61--but not dangerously so, and definitely not this level of impaired low. Tula is not responding--not to touch, sound, any stimulation. Just staring off into space. I have given Michael the crash snacks--Oreos, Ginger Ale, and fruit snacks--and he is trying to get her to eat. I am also googling "night terror" because I haven't seen one since Ben was a tiny guy. Cosmos and Benjamin have woken up because their bedrooms are on either side of Tula's room. She is crying in this broken way. The left side of her mouth is drooping. She just keeps at those shaky, uncontrolled movements, that obsessive scratching.
Tula was diagnosed with Type I Diabetes when she was 9 months old. This is information most of you are in possession of, but if there are new readers, a refresher cannot hurt. She was the second of my kids diagnosed with this particular autoimmune disease, Cosmos having earned it five years before. At the time, Tula was starting to eat solid foods, but had several food allergies (soy, dairy, eggs) that were causing so many issues that she was still pretty exclusively breastfed when she went into Diabetic Ketoacidosis (DKA). It is very difficult to carb-count for breast milk because it is hard to be certain how much the baby is getting, or how sugarific the milk has adapted based on baby's need. She co-slept with us at the time, and we lost count of how many times we woke up in the middle of the night having overcorrected with her insulin and she had crashed. Her little body would be cold and her lips blue. She was a combative low, which meant that her brain treated this threat to survival with straight fight instinct: even though she needed to eat, she squalled and fought with everything her 17-pound body was worth.
Maybe she is being combative again? It hasn't happened in a long time, but it is not impossible.
I start prepping the Baqsimi nasal spray.
This may get tedious with explanations. It may be condescending. I don't know. It is not my intention to be condescending. It is only my intention to make sure that all readers are on the same page. Fair enough? Okay.
So in a normally functioning body, your pancreas's alpha cells release glucagon to help regulate your blood sugar, telling the liver to covert its stores to glucose and dump it into the bloodstream (among other things). This communication is disrupted in Diabetics, even though the alpha cells (as far as I am aware) are not destroyed by the same autoimmune response that trashes the insulin-producing beta cells. So when a diabetic receives too much insulin and a severe hypoglycemic event occurs, it is necessary to administer an emergency dose of glucagon, either through an injection or (more recently) as a nasal spray. It nearly immediately shoots a critically hypoglycemic number up into a healthier range.
We have actually never used a glucagon, though there have been occasions where we could have. There was once when Cosmos was completely -not home-, confused and slowed down considerably, where the meter was reading like 26. We refer to this as the "cat-lips" incident because I was trying to judge mental status and asked Cosmos questions they should be able to know, including what Remy's name was. Their response was terrifying in the moment, but giggle-worthy once we were past it. But as long as the child is still able to eat and keep carbs down, we have not administered the glucagon.
So Michael and I are arguing over whether or not to do the spray because we will have to go into the Emergency Room if we do, and it is just such a minor low. 60-70 is crashed, but under 60 is the real Danger Zone. Michael rubs Oreo Cream on Tula's gums and we put ginger ale on her lips. She is so responsive to carbs, that little bit lifts her up to a normal range (74), but she is still crying, her body moving in jerky movements, her mouth gaping, sagging toward her chest. She vomits on herself and Michael. It is like she is alone in the world--she can't hear us speak, can't respond to questions, doesn't look at us.
We have dealt with a lot of lows; this was not looking or feeling like a low.
Cosmos and Benjamin are terrified. Ben thinks it is a stroke. Michael is calling the on-call Endocrinologist, but we know what they are going to say: if you have a concern, take her to the ER. Ben and I stuff Tula into the first set of clothes we can find, but no shoes. I call my mom to come sit with the other three kids, and we leave Cosmos temporarily in charge of Gabe, who has not woken with all the hubbub going on in the house.
Michael carries Tula to the car, but she can't sit up in the booster seat. I cradle her in my arms and we drive to the stand-alone Hendricks ER. This is the only thing she recalls so far from this night: that we were unable to wear a seat belt in the car.
Thinking it cannot possibly help us at this point, I yank the Omnipod off of Tula's belly. We don't have the controller to communicate with it anyway. She is crying quieter now, but is notably weak and uncoordinated. She is dead-weight in our arms, showing no signs of hearing us. It is about 4 in the morning, less than an hour after we woke up.
This ER is always fairly quick, and it is not far from our house. That was literally all the determination that went into where we ended up. They take us to a room. Michael and I struggle to communicate what is going on. Tula has stopped crying. The staff test her blood sugar and it is a fine 91. They don't understand why we brought her in--the "low" was only moderately low, and she has corrected. She doesn't look like she is in active distress, babbling incoherently to herself. She is showing some small signs of improvement, like turning her head toward people speaking to her, and smiles when she sees me or Michael. She isn't completely unaware.
I remember Michael saying "That isn't her." There is a note of desperation in his voice.
I say, "She is verbal."
All three nurses in the room turn back to look at Tula, who sounds like an infant with her vocalizations. They asked what we would like us to do. I ask them to call Abilene Children's Medical Association, or Cooks Children Endocrinology. I said whatever on-call physician would have enough information from the name to be able to tell them what to do. The nurse informs me that they can only call if they intend to admit, and they can't do that without running tests. I tell them to run whatever tests they feel they need to run.
They bring in the phlebotomist, who with the nurse gets the IV placed and blood drawn. I remember this woman because she kind of reminded me of my mom. She had that grandma energy, bubbly and smiley and professional, engaging Tula so she wasn't scared. I don't even think she fought the IV, which is unusual for her, though she did cry when they placed it. Whenever someone would talk to her, she would babble back like it was words. She still couldn't follow directions, and had urinated on herself. I stripped her down and stuck her in the only patient gown they have, an adult sized in blue that dwarfs her. She vomits on it and I change her again and they inject her with an antiemetic. They ask if she can give a urine sample.
For a brief moment, I wonder if she could be faking. She likes playing as "Talking Baby", though she hasn't done it in a while. If she is, she is really committing to the bit.
I try and get her to comply with a simple request like sit up or shake mommy's hand. There is no comprehension there, and she can't organize her motor movement to complete actions she independently decides on, like grasping her stuffed dolphin. I say we will likely have to do an in-and-out catheter.
Michael had stepped out to get fresh air because he is so freaked out by the screaming and the babbling and the everything. He tries to come back in, but I order him to leave. He trusts me and doesn't ask questions.
I will not go into detail, but it was not a pleasant experience. We got the urine sample.
The phlebotomist comes back with a wombat toy with a squeaker inside it. She makes the little wombat dance and squeak. A previously terrified Tula starts to giggle, making happy baby noises. She reaches out with one hand, the other making stirring motions but unable to lift with its companion. The phlebotomist tucks the stuffed animal in beside her.
There is a lull. Michael and I are watching her, and we ask ourselves...what if this is permanent? What are we going to do with -two- special needs kids? This hits so hard because Gabriel has always been Gabriel; but not 12 hours ago, we were telling this brilliant, chatty, bubbly little person we needed a break from her constant stream of conversation...and we might never hear her speak again. We are exhausted and confused and terrified.
The ER staff orders a chest x-ray and an CT scan. We have not yet seen a doctor. We are able to transfer Tula to a wheelchair; the x-ray goes decently, but she has to be completely strapped down for the CT scan. One of the nurses holds her head still with two rolled-up towels. She screams and screams. I stay by her arm, reassuring her, and Michael holds down her legs.
It is about 6.30 at this point. They say all the tests are coming back normal, except that her sodium is low--127. They say only slightly low. It is supposed to be between 137 and 147 (I think. This is what a doctor later on in the stay told me, so it is only secondhand). They are waiting until the doctor gets there to decide what to do next, but they are giving her some fluids to offset the low sodium. The doctor is coming in at 7.
We saw very slight improvements since we had arrived, but after the fluids, Tula was able to say "Mama". She repeated "I love you" when I said it to her. We asked her if she knew who this guy was. She turned toward Michael, but there was no recognition.
It was when she started talking that it felt the nurses started seeing what we were seeing.
Once the doctor got there, things changed fairly rapidly. The doctor calls the on-call for ACMA, who is Dr. Palmere that day. Kelly actually texts me and asks how Tula is doing directly, and says she is recommending she be transferred to Cooks. They say she is "complex" and needs to be evaluated by a pediatric neurologist, which we do not have in Abilene. They are sending a solid-air and wheels have already left the ground. I message Amber to bring us some clothes; I send Michael home to rest because he will have to drive in behind us. They ask how much I weigh because the plane is so small that passenger weight determines whether or not I can go with her.
Mom brings clothes up to me while Michael is home, and sits with Tula while I do registration. Tula vomits on her. Jarrod comes in and gives her hugs and promises her ice cream. She is slowly coming back to herself since the IV transfusion, but she vomits on him as well. They give her another dose of the antiemetic. Amber brings me a coffee and Maryn gives me a hug.
We ride in an ambulance to the airport around 8.45; wheels are in the air by 9. Tula is giggling and slurring partial Christmas songs to herself. For someone that is deathly afraid of being restrained and the tall slide at the park, she is taking this strapped-to-a-gurney-thousands-of-feet-in-the-air thing pretty decently.
The flight is quick and relatively painless. A guy in knee-high yellow socks asks me if I need to go to the bathroom when we disembark. I tell him I am okay, even if it is 20 minutes away from the hospital.
We load up into the second ambulance of the day. The sirens aren't on, which I appreciate. The engine makes a weird growly noise, like when it is in the wrong gear. Was the last one like this? I remember lumbering, but quiet. The driver directs the vehicle in the white "V" between I-35 and the on-ramp near exit 52, Pharr Street. He gets on the radio and says, "We are going to need another ambulance; our turbo just blew".
I sit very still and quiet. It has not been our day. We are ten minutes away from the hospital, stranded in the middle of a very indifferent highway.
We wait, cars passing by with enough speed to rock the rig. Mike, the driver, calls 911 twice to get someone out there to block traffic so they can safely transfer Tula was the new rig arrives. They say they cannot spare firetrucks, but will send police.
The new rig arrives. We wait. The 911 response never shows up.
I am asked to move into the new rig. I watch as they unload my child, still strapped to a gurney, out onto I-35, a road I am loathe to even drive on.
We get to the hospital, where my grandparents are there to greet me. They sit with me until Michael arrives, and get me the first food I have all day. It made me feel better to have someone, and it was nice to visit with Papa. Tula liked seeing Gigi. She was starting to look and sound a lot more like herself. She passes the neurological check the ER doctor administers.
The ER ran more tests and found her sodium after fluids was still low (132). Blood gas is now slightly acidic because she hasn't had any insulin since I pulled her pod at 4 am, 7 hours earlier. It only takes four hours normally after pump removal for a diabetic to go into DKA, but she has barely gotten up to 300, and there is no talk of ketones. They give her three units of fast-acting insulin (humalog), and she drops to 95.
The hospital decides to admit us. The sense of urgency is gone. There are no pressing symptoms anymore. Just a girl that is very tired, pretty spacey, but not in immediate danger. We don't get moved up into a room until 4. By this point, the small amount of insulin they gave her crashed her blood sugar without food. She finally gets to eat, crackers and cheese cubes and a little juice. She is exhausted and crabby. We order her a turkey sandwich, and Michael runs to the store to get us some food.
The rest of it is pretty much boring hospital stuff. A lot of tests and waiting. When the general doctor (Dr. King) came in, Tula was completely naked getting ready to take a bath. She startled and tried to cover up with her patient gown, but when she realized it was a doctor, she dropped all pretenses of modesty and walked around naked. When the on-call endocrinologist, Dr. De le Torre, walked in to see a completely unashamedly naked child, Tula called out "are you a man, or a doctor?" to see if she needed to put on her gown again.
Her sodium levels didn't dip again while we were watching it. Her blood sugar crashed every night while we were there, but she never woke up. A common problem with diabetic kids that have long had it: hypoglycemic unawareness. Gabe, who has only had it for two years, relatively recently all things considered, is very aware of the physical changes that take place when he crashes. Tula, who can't remember a time before she was riding the blood sugar roller coaster, doesn't really register it anymore.
They kept us until they ran an MRI. After retelling our story many times and having her examined, labwork reviewed, the general consensus was:
Tula had a seizure. All of that scary shit after was the postictal state, the period of time after a seizure. It was either caused by the low blood sugar or by the low sodium. The endo said either way, it was mysterious, because 61 wasn't low enough to cause a seizure, and there doesn't appear to be a reason that her sodium levels were that low, either.
She said that it is a chicken and the egg scenario, because a seizure can cause low sodium, but low sodium can cause a seizure. There is a condition known as Addison's that is also an autoimmune that is sometimes associated with diabetes, but they didn't see any more dips in her sodium after the initial bolus of fluids. But in the first ER, she spent hours nonverbal and infantile until she got that bag of saline.
A hypoglycemic seizure would make sense if the blood sugar was lower; they theorized that, by some miracle, maybe the message got through from the beta cells to the liver, who was able to dump enough sugar into her bloodstream to keep her alive. Or, as I believe, that her convulsive movements clawing at that pod knocked the cannula out and she stopped receiving insulin. The low blood sugar theory also makes some sense because she did continue to dip overnight on her current basal rate; her insulin sensitivity is still pretty high, and fluctuates throughout the month, so a dose that is appropriate last week might be too much this week.
Either way, that night could have gone...a lot differently.
Moving forward, there are follow-up appointments with the pediatrician on Thursday. We will discuss checking sodium levels and maybe next steps. We will meet back up with the endocrinologist and check in with blood sugar readings and basal rate checks for the next couple of weeks.
And I will probably keep my nightly vigils for a little bit longer.
Thank you to everyone who reached out with love and encouragement, to sit with us or to pray for Tula. Thank you to my family for rearranging their whole lives to take care of my other three while Michael and I cared for this one. Our support system is unparalleled, and we are blessed to have all of you on our team.
--Andie
