Tula's Bad Day, Part 2

Warning for all you delightful readers out there:

This next section is going to be tough to read at times. It was a difficult time for all of us, but

particularly for Teeny 9-month old Tula. I write because it is a moment that needs to be

remembered in all its ugly, painful glory. Feel free to skip and jump in next time, when we are

on the upswing and things start getting a whole lot more optimistic.

Continued from “Tula’s Bad Day”

Tula had been poked and drained and hooked up to every machine to monitor every function

of her little body. She had, blissfully, slipped into unconsciousness, which we knew from

experience she would likely drift in and out of for the next twelve hours. (This educated guess

brought to you from five years prior when Tula’s older sister went into diabetic ketoacidosis and

went through this very same thing.)

The charge nurse called Amber at the pediatrician’s office and told Dr Shah that he was

needed back. Knowing they had made only one hospital referral that day, Amber knew to

who she was referring. She must have been so scared. I wish I could have spared her that.

As it was, I was outsourcing all communication relating to my mother and Michael so I could

focus on the situation at hand.

Dr Shah and Amber discharged the rest of the patients for the day, asking them to come back

tomorrow. We had gone up right at around lunch time, so Dr Shah didn’t even get a chance

to eat. He just came up there and sat with us or nearby until we left.

They moved us to another room. There are no endocrinology specialists at the hospital

where we were, so we would be careflighted to a children’s hospital a few hours away.

This concerned me quite a bit, but we were going to do what needed to be done.

The first person I had asked my mother to call was the children’s minister from our church.

A short while after we were moved, Jennifer showed up to pray with us. She had let the

elders and church know, which was a comfort.

Tula looked so very calm and peaceful; it was hard to know how bad it was.

All of the hurt was inside and anything outside was covered by a hospital blanket.

If she could sleep through it, how bad could it be?

She wasn’t allowed to eat until she was taken off of IV insulin so they could very gradually

bring her blood sugar down while rehydrating her. Pushing it too quickly could have catastrophic

consequences—seizures, cerebral edema, coma, death. Though we have been introducing

solid foods at home, the bulk of her nutrition comes from me nursing her. We had to ask the

nurse to track down a pump so that I could express the milk she wasn’t drinking. Food was the

last thing on my mind, but I hadn’t eaten anything all day. Michael made me sit down and

eat a veggie burger and hummus and pretzels.

The weather was foggy and dreary; it had already iced over and was expected to snow,

so the helicopter couldn’t come get us. In its place they sent an ambulance which would

arrive in a couple of hours. In the meantime, I would be able to hold her, carefully.

I set up in a recliner next to the bed with a nest pillows and blankets on my lap. The nurse

helped settle her in my arms so she wouldn’t be laying on anything painful or uncomfortable.

It made me feel better to hold her.

Two leaders from our church came to visit while I loved on her. I’m sure I wasn’t the best

company, but it meant a lot that they were there.

Michael’s parents drove up from Lubbock—together with my family, we decided on a plan

for how to handle the rest of my kids. Our personal care assistant and brother Jarrod were

both at the house keeping them. It was decided Gabriel would fare best with Jarrod, who is a

special education teacher. Mom would take Benjamin. Rhonda would pick up Emerald and

bring her and Michael to the children’s hospital. Tula and I would ride together in the ambulance.

They asked us all to leave the room so they could try and place an arterial line.

We stood outside the door and listened to weak cries impotently. It was pitiful and painful

and nearly unbearable. They were unable to complete the procedure.

At around 5, the transport team arrived. They were so very nice. They strapped my little

baby to a gurney and we loaded up and we’re on the road by six.

I had to sit up front, which felt very, very far away. I couldn’t reach back and touch her,

couldn’t hold her hand, couldn’t stroke her hair. I also couldn’t get in the way.

On the rearview mirror there was a camera that showed what was going on back there,

sort of like a video baby monitor. On the dashboard, there was a clock. Knowing the ride

was going to take about two hours, I allowed myself to turn around and check on her every

ten minutes and no more. The entire way I sat straight and still and silently, glancing occasionally

at the time to know how long it was before I could turn around again.

When we neared the metroplex, the driver turned on KLTY, Christian radio. I remember

the song that was playing—

Be strong in the Lord

Never give up hope

You’re gonna do great things,

I already know

Gods got a hand on you, so

Don’t live life in fear.

Forgive and forget,

But don’t forget why you’re here

Take your time and pray,

These are things I would say.

It helped.

My grandparents met me at the hospital so I wouldn’t have to be up there alone.

They held T’s hand while I filled out paperwork and the staff went through all the stats checks.

We arrived around 8, Michael followed at 9. Though she doesn't have many words yet, she opened her
eyes and said, "mama? Mama!" She grabbed my hand and wouldn't let go, sinking back into unconsciousness.

The first night was rough. I had been up all the night before with a vomiting baby; now

they came in every hour to do blood sugar checks and blood gases. One of the IVs had clotted

so they were unable to draw from there; they had to poke her fingers and toes and heels and

milk them for blood. There were so many cuts on her hands and feet that it looked like

she had crawled through glass.

In PICU, there was a straight backed chair and one of those hospital sofas that you’re

supposed to sleep on. I got the first shift on the sofa—it was so cold, I piled blankets on me,

curled up in ball hoping to rest. At 2.30 we switched, and I stayed up the rest of the night.

Slowly but surely her blood sugar came down, but as it did, Tula became more awake and

more aware. She was cold, in pain, scared, but mostly importantly, she was hungry.

The only thing I was allowed to give her to eat or drink was a sponge on a stick soaked

with a bit of distilled water.

You could hear her stomach growl over and between her cries, watch her greedily and

desperately suck the sponge dry. She gets food and comfort from nursing and she didn’t

understand why mommy was holding her and not feeding her. It made her so angry and she

screamed and thrashed; I’d sing and rock her to sleep and hope the next time she woke she

would get to eat.

Unfortunately this was Sunday, New Years Eve. Which meant we were waiting for the

doctor to visit and adjust her care plan to allow for food on not only a weekend, but a holiday.

It felt cruel.

We were not allowed to eat in there, which meant we could either leave her side or just go

hungry. You can guess which we chose, at least until she was able to eat herself.

Tula was fully awake and aware now. There was an IV pumping insulin, antibiotics,

fluids, electrolytes, and sugar on her right arm. On her left hand was an IV that had clogged.

She had heart monitors all over her chest, a pulse ox monitor on her big toe, a blood pressure

cuff on her calf.

They needed to draw blood but all her major draw spots were shot; her vessels are so itty

bitty to begin with. So Michael and I have to physically restrain her while they stab, dig, dig,

pull out a little, dig, remove the needle, stick her again in a new place. This happened over

and over again for forty five minutes. At first, she fought so hard I was afraid she was going to

pop her shoulder out of socket trying to get away. After a long while, she just sort of whimpered

and squirmed, like she had given up and was resigned to it. I’m not sure which was worse.

Finally—finally—they got a spot and drew enough blood for the two tests...and it immediately

clotted. All of that, and for nothing.

That was so emotionally taxing, I asked Ken and Rhonda to sit with Tula while Michael and I

went to the cafeteria. I didn’t feel like eating but I had to get out of that room, even for a little while.

A regular room opened up; we moved up a floor. Things were more relaxed. They took one

IV out and let Tula take a bubbly bath. Her face was dried out and red; I had to rub aquaphor

all over it. She got to put on clothes for the first time in a day. When daddy walked in the room,

she gave him the first smile we’d seen from her in a while.

Emerald wanted to celebrate New Years, so she brought streamers and noise blowers and

hats and poppers. She tied the streamers to Tula’s crib bars.

She kept messing with and kinking the remaining IV until it just got pulled out. They decided

it wasn’t worth replacing, much to all of our delight. It meant that she could crawl around and play.

I laid some blankets out for her and gave her a little compact mirror, a plastic bottle, a noise blower.

She was so happy, so much more herself.

I made up that awful couch bed with blankets and she slept in my arms. It was the first time

I had rested since this whole thing started because I felt like she was safe.

Everything after that point was moving us closer to going home. She improved so very

quickly, adapted to getting shots and finger pokes. Now she just looks at you curiously,

doesn’t even cry (most of the time anyway). They figured we had been through so much

training already, there wasn’t a reason to keep us there. So they packed us up and sent us home.

The hardest part was…well, the most challenging part of developing her diabetes plan was

that she is almost exclusively nursed. We have introduced food, but her carbs come primarily

from me. We have had to work on figuring out how to handle insulin when you can’t know how

much milk/carbs she’s getting. When she does eat people food, it isn’t enough to count for much

of anything. Her insulin does are so small, microunits, that just a few drops off can be detrimental.

Yesterday we were off by 0.5 units of fast acting insulin and she dropped from 416 to 20. She was

so weak she could barely cry.

I don’t know if we can handle this….all of this. I do know that we don’t have much choice,

and that we are going to rock it the best we possibly can. Because this furious, beautiful, perfect,

strong little girl is worth everything in the whole world.

—Andie