Today’s the day I ask questions

It’s funny that I’m writing a blog post about questions, considering a majority of my 10 year relationship with my husband he’s been telling me I ask too many questions. Who would have thought that asking questions would turn out to be beneficial in understanding our situation with Quinlan. You’re welcome, Bear!

I wanted to share some questions that I’ve had to ask in the last 3 years. Questions I never thought I would ever have to ask in my life. Some are good. Some are bad. Some we would not have understood if it wasn’t for our situation. Some make sense. Some don’t. This is a peek into “Lindsay’s World of Questions” from the last 3 years.

What is tense muscle tone?

Why is my 24 hour old son getting an MRI?

What do these machines do?

What are all these beeping sounds?

What did the MRI show?

When can my son leave the NICU?

Why is his body temperature so cold?

Why is his mouth blue?

Why is he having seizures?

Will the spinal tap hurt him?

Will the EEG hurt him?

Will these medications have any side effects?

Will he ever walk?

Will he ever talk?

How many more EEG’s will he need to have?

How do we use this feeding pump?

Will the breathing tube hurt him?

Why is he on a paralytic?

How many seizures did he have today?

How many more days will he need to be on this antibiotic?

When can we hold him again?

Will the trach be beneficial in the long run?

How often do I change his trach?

Why can’t he sit up?

Who’s the nurse working with him tonight?

Was he awake enough for therapy today?

How do his lungs sound today?

When can he come home?

How many hours of nursing will we get a week?

How do you suction?

Why is his heart rate so high?

Why is he only SATing at 80%?

Why is Quinlan on precautions?

How many liters of oxygen is he on?

What is Brat1?

What are the chances another child of ours will have the same genetic mutation?

Are we emotionally ready to have more children?

When will the ambulance be here to bring him home?

How do I set up all these machines in the house?

Who is the nurse (aka stranger) coming to stay at our house tonight so we can attempt to sleep?

Why did the nurse call out tonight?

How am I supposed to stay awake all night after working all day to make sure he doesn’t have a seizure or miss any of his medications?

Did he have to go on any oxygen today?

What is his PEEP set to now?

How are the granulmonas around his stoma looking?

Do I trust this person to change his trach in the case of an emergency?

How many ketones showed up on his test?

Will the keppra cause any issues with the trileptal which will cause issues with the topamax which could cause issue with the onfi which could cause issues with the Dilantin and could cause issues with the phenobarbital?

Who is the doctor on call when we bring him into the ER again?

Should I pack another overnight bag?

Can I take more time off of work while Quinlan is still in the hospital?

How do I say goodbye to him?

How do we go about donating his brain to research so this won’t happen to any other family?

Which anti-depression drug should I go on?

When should we start the IVF with PGD process?

What happened to our son?

Well, that was harder to write then I thought. I haven’t had to think about a majority of these questions for quite a while and it definitely put me back to how life used to be. There’s the “now” and the “how it used to be”. I’m still getting used to the “now”.

💚Mama Bear

 

 

 

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