Lessons Learned during hospital stay

I have been compiling a list of lessons I learned in the past week. Please keep in mind that some may be specific to Cincinnati Children's, but most are pretty generic. I tried to separate them into categories for easy viewing. 

What we should have taken, but didn't:

• My own pillow for sleeping in the room, Hospital pillows are awful! 
• A few more bags to take stuff home. It is amazing how much they accumulate. 
• More pairs of underwear for G. I took a few pairs that were getting too small so if she had an accident, I just threw them away.  The laxative worked a little too good and we ran out of underwear. 
• A few cans of Sprite and Ginger Ale. Hospitals are getting away from providing sugary drinks to patients. Sprite was all G would drink for 2 days, so we had to buy bottles at the vending machines. 
• Roll of tape. I had to use some from the nurse's station to tape up G's cards from friends.

What we should have left at home: 

• My laptop. We had our Ipads and phones, and that is all we used. The laptop bag just sat and took up space.
• Movie DVDs. They didn't take up much room, but were never used. We activated our streaming Netflix account before leaving and used the iPad. So we never used any if the movies we brought. The Child Life Specialists had a broad range of movies as well. 

Things we were glad we brought:

• iPad and Netflix subscription
• Snacks
• Extra, empty bags. (Even though we should have brought more)
• Slippers for everyone staying in the hospital room.
• Dirty clothes linen bags. Every couple of days, we would take a linen bag to the car to help with space.
• Sweatshirts. Hospital rooms are cold no matter how much you turn up the thermostat. A zip up sweatshirt is your best friend.
• My own bar of soap. I bought a trial size of the soap we use at home and it was nice to have that little bit of home with me. Sounds odd, but I promise it is true. 
• My USB battery pack. Here is the link to the particular battery pack we use.  This is a handy device no matter where you are, but it especially came in handy at the hospital. I was able to run the iPad off of the power supply when G was watching movie without worry about battery life. I highly recommend one for daily life.

I talked about our "Drive Home" bag in an earlier post. Even though we didn't need it, I am so very glad I had the foresight to gather the stuff together. 

Miscellaneous lessons:

• G benefited greatly from french braiding her hair into pigtails. It gave the ability to shave along the midline without disturbing the braids. And we didn't have to worry about excessively tangled hair during the hospital stay. 
• Defizz the carbonated beverages. We learned to open the sprite as soon as we got it to eliminate the fizz factor. Post op, the carbonation made her cough which was very painful. 
• Make sure you understand what medications are being given and the common side effects. You will be with your child and need to know what to watch for. G was on a variety of meds including strong pain meds, steroids to prevent swelling, prophilactic antibiotics, muscle relaxant, reflux meds, and nausea meds.
• Meds will make them very drowsy. This is a positive short term side effect in my mind. It allows them to relax during the most painful part. But they will be wobbly when walking. 
• During post op days 2&3 is when most of the swelling and stiffness occur. Bare this in mind if you decide to refuse any medications.
• The neuro monitoring used during decompression surgery at Cincinnati can cause bruising at the needle sites. Don't be concerned if you notice small bruises pop up during the days after surgery if neuro monitoring was used. 
• Cincinnati Children's offers meal cards. They are $6 each and allows you to get an entrée, 2 sides, a dessert and drink.  You cannot use them in the cafeteria, rather you need to use the room service number to order your meal.  I typically ordered mine the same time as G's meal.  The other rule is that they will not include a soft drink.  You must get tea, milk, juice, etc. 
• Before leaving for the hospital, I spent a day cooking make ahead freezer meals.  I am so glad I did so that now, I can concentrate on G's needs instead of figuring out the next meal. 

I hope this list helps someone out there to prepare for an upcoming decompression surgery. Feel free to add anything I missed in comments!