Build a personalized fact sheet about the accommodations you will need during your admission.

The rest of this tool is about the person you care for. This part is about you. Almost nobody prepares you for it, so here is what I have learned over a lot of admissions.

This is not selfish. If you are not in good shape, you cannot care for your child. It is the oxygen mask on the airplane. You put yours on first, and then you help everyone else. It is exactly the same principle here, and I have learned it the hard way more than once.

Last year my son had an unexpected rhabdomyolysis admission. No EEG leads that time, and I still hit almost every one of these problems, because the underlying issue is not the test. The underlying issue is that I cannot take my hands off my child, and hospitals are not built around that assumption.

Set up a station

Have a box, a bag, a rolling cart, something, with everything you might need to grab quickly without standing up. For you and for him. Assume you will not be able to leave the room to get anything. Assume that for the entire admission.

Coffee, and I am not joking

The coffee cart might not come until ten in the morning. If you need coffee before ten, and I do, you have to solve that in advance. Instant coffee works but you need hot water, and your room probably does not have hot water. This time I am bringing a tiny coffee maker with me.

You might ask why not just order delivery. Because somebody has to go down to the lobby and pick it up, and that somebody is not going to be me. I will not be able to take my hands off my son.

Shelf stable caffeinated drinks are the fallback if you do not mind them warm. Most children's hospitals have a family fridge and pantry, which is lovely, and which you will not be able to reach.

Ask about a sitter, and know the limits

Ask ahead of time for a sitter. I am warning you now that this is unpredictable. You will often hear that the schedule is unclear. And even when the schedule is fairly predictable, there is no guarantee that anyone shows up in the window when you actually need them.

During that admission, my biggest challenges were not clinical. They were going to the bathroom and taking a shower.

Some families have a hospital-provided sitter in the room during all awake hours as a standing arrangement. That is the version of this that works. Ask what is possible at your hospital, and ask early.

Figure out the meal voucher system in advance

I learned this one the hard way. I could order my son's food easily. My food was an entirely separate system that required a special voucher, and I did not find that out until I was hungry and stuck.

If this is an emergency admission and you cannot do the research yourself, this is a perfect task for one of the people who texted you "let me know if there is anything I can do to help." There is. Tell them your room number and ask them to figure out the meal voucher system and call you back. Many people want to help. This is a real job they can do.

The thing about not being able to step outside

When my son had his brain surgery, nobody had thought about any of this. I was completely alone with him, and I could not step outside the room, not even for a minute. Doctors would ask me to come out into the hall to talk. What am I supposed to do? He has just had a craniotomy, the bed is I do not know how many feet off the ground, he has no safety awareness whatsoever, and he could climb right out of it.

Even in a situation that serious, the default assumption is that a parent can walk away from the bed. Plan for the fact that you cannot.

Ask about showers, and make it easy for them to say yes

You can ask for a semi-regular shower. And here is the thing that will make the care team's life easier and therefore make your ask more likely to succeed: ask them when is generally best.

They have a lot of other kids, and emergencies happen. Your shower is not going to take precedence over an emergency procedure, and it should not. But they usually do not like doing things during shift change and handoff, so if you avoid those windows and say so out loud, you are showing them you understand how their day works. That goes a long way.

Say up front that you need the highest level of accommodation

Everyone at the children's hospital has your best interest at heart. But you are not their only customer, and most people in this world do not think like someone who cares for a person with multiple, severe disabilities. That includes people who work in hospitals. They will usually start by assuming that you can manage everything yourself, that your child follows directions, that he is neurotypical and behaviorally typical, and that he will contain himself.

So say it plainly and quickly. Tell them from the start that you need every accommodation they have, rather than letting them work their way up incrementally and discover each problem in real time.

And tell them you are willing to compromise and try different things. A lot of staff are reluctant to bring up more restrictive options, like elbow immobilizers, because they assume no parent wants to hear it. Letting them know in advance that you are open to it takes that awkwardness off the table entirely. The last section of the About them tab is where you say so.

Write down your specific concerns and bring the list

Mine are usually eloping, not being able to leave his side even for a moment, and equipment coming off. Yours will be different. Write them down, hand them over, and ask them to put it somewhere the whole team will see it.

That is what the rest of this tool does. Fill it in, print it, and hand it to someone.