Revisiting surgery prep

What to bring to the Hospital

Backpack or large bag for stuff - yes to this

Long phone/electronic charger with block

Headphones for music/ebooks, etc

Slippers - yes to all of this; I hate when they take me to the MRI and make me walk on my bare feet on the dirty hospital floor.

Cardigan or light robe or similar that is easy to wear with a gown and wires for warmth and coverage - I didn’t use this, but I believe I would have I was in the hospital longer or needed extended PT while I was in the hospital.

Small toiletries like toothbrush/ toothpaste. And necessary face products or wipes, chapstick, etc - yes to all of this

Earplugs ( I have loop ones, but I also brought cheap ones because things easily fall out of my ears) - no to this or any music, headphones. Anything like that was overstimulating, and anything touching my head was painful

Keep all jewelry at home - definitely yes

Loose clothes/ sweats, wide-neck shirts, few pairs of underwear, socks - this was a yes; I wasn’t in the hospital for very long, but if I were, I would’ve changed more often

Front clasp bra - this was a no for me; the front clasp was complicated. And for my surgery, it was easy to put on a bralette. If you’re in this situation, you probably already know this, but they don’t let you go to MRI with a bralette or sports bra due to concerns with possible metal in some of the stitching or the adjustable straps.

Small art supply kit - I actually did do a small painting and some drawings in the hospital. They looked awful, but it gave me something to do.

Community engagement:

We created a spreadsheet that could be used as a sign-up for family and people who are close to us to help with childcare for six weeks.

This was helpful before surgery to find out who was able to help and to adjust any schedule changes. As I suspected, no one read my long list of what my child's schedule was like. However, I was alert enough to help people and give tips and advice. I probably intervened too much, which delayed my recovery, but I was certainly aware enough to talk about the schedule. I should’ve walked away after that.

My husband started a meal train:

The meal train was obviously really great; at some point we said maybe no delivery gift cards because those delivery companies are so expensive. This was dumb. People don’t know what to do or how to help, and this seems like an obvious choice. It is true. These companies are very expensive, and as time went on and the meals that people prepared for us were gone, ordering food was much easier for my husband than cooking, and I was too fatigued to help much.

My advice on this is to try not to be super specific, and do not decline any care or help anyone wants to provide for you. At first, I said no donations because that made me feel weird. However, we did use those to buy groceries and to buy a deep freezer. All of it was helpful.

One other thing to say is that you might need to be very straightforward in telling people that you need help. I kept saying things are ok; some people made us food. Some of my family took this as there was nothing to do.

This caused a lot of hurt for me because I felt like these family members didn't care. I did keep saying things were ok, but what I really needed was for them to come by and do some sort of expression of care or concern. I have a hard time asking for help. During this time, I also have had a hard time thinking at all or communicating. I don't have a great answer for this, but maybe being more clear on what your recovery is like.

I probably needed to spell things out more clearly either before or after. Maybe I needed to say I appreciate the help we have had, but it would be great to see you, and we could use an extra hand. Things are difficult, and I don't feel well. Something like that? I don't know.

Meal Prep:

Meal prep for soft foods, frozen foods, and going to Costco to buy bulk of essential items was helpful. Highly recommend it because it’ll be hard to think of what you need daily while you’re recovering. People will ask for diapers and toilet paper, etc.. It was nice to just know it was there and for me to have it all in the same place so it was easy to find.

Having so many smoothies already made in the fridge/freezer was so nice and so helpful. I would wake up and be able to eat a smoothie and take my meds. Having a ton of yogurt was also a great idea.

Non-prescription comfort medication:

Large bottles of Tylenol and ibuprofen were great. You’ll need to check with your surgeon, but I was able to take anti-inflammatories eight days post-op or something. Some of the things I discussed previously were not as necessary. However, I did get constipated with some of the nausea medicine and opioids, so I was grateful to have a laxative available. Straining does increase ICP.

Ice packs, things that are soft enough to put on your head, such as migraine wrap

This wrap was a big yes; I ended up buying two. It helped a lot with my headaches and eye pressure.

Heating packs, probably for your neck, because it might be sore: my neck was sore and stiff, which I think led to some extra jaw pain. However, I didn’t use the heat pack at all. Stretching and neck exercises are what are recommended by my speech therapist.

Also, not a medication, but we bought large packs of chewing gum. Gum was an OK idea 4/10. It was not the miracle I had hoped it was. I think it did help a little bit with my jaw strength and mobility, but probably not enough.

Consider having symethicone because no one wants to deal with that. I didn’t use this, but if you’re putting a lot of whey protein in your smoothies, it might help.

Clothing etc:

Obviously comfy clothes.

Yes, comfy clothes were nice, and having an abundance of them that are easy to put on was good, especially for the first week. After that, I wanted to get dressed and feel a sense of normalcy. I was able to put on shirts and pants while sitting down. I would not buy a whole new wardrobe. Having some loose shirts was nice though, especially the first two weeks.

I bought some silk pillowcases and also washable pillow covers in case there’s a lot of drainage.

0/10 I really didn’t have a lot of drainage, and the silk pillowcases made me fall down my wedge pillow. I wouldn’t recommend them.

I bought an upright pillow/wedge for my bed pockets for my trinkets.

I am four weeks post-op, and I am unfortunately still using the wedge. I’m very ready to be done. I do get pressure headaches when my head is lower than 30°. I never use the pockets of the wedge. I’m too forgetful. I would forget anything I put in there. At this point, I’m slowly decreasing the angle as I practice my brain breaks. I hope to be off the wedge by next week.

I bought a silk sleeping cap.

If I can recommend anything, it would be the silk sleeping cap. I loved that my hair wasn’t wild with it. It covered my incision completely. It was very easy to wash every day. And much easier than washing a pillowcase and having to put it back on; doing that is so annoying. If there was drainage, it would be easy enough to throw away and buy a new one. When I use this, I wouldn’t slide down the wedge. 10/10

I thought about buying a shower cap, but my surgeon did not give any shower restrictions and encouraged me to shower and use baby shampoo. So I held off on this. I did not need a shower cap.

I already had some loop earplugs and made sure to find them and make them readily available in case I get overstimulated.

This is still a maybe; if I could remember anything, I might use this when I go out of the house. I’ve been to two restaurants and each time I’ve regretted it immensely. The loops might’ve helped.

Probably the most ridiculous thing I purchased was the soft safety helmet

I still can’t get over this photo. This helmet was not necessary for the first 3 to 4 weeks. I couldn’t do enough with my son, and I had good help around. He mostly lashes out when someone’s lifting him or doing something he doesn’t wanna do. The first 2 weeks I wasn't doing as much physical care. My son absolutely lashes out at me, and when he’s mad at something or someone else, he does run up to me and try to hit me. For the most part, he cannot reach my head, and I try to stay out of hitting distance.

Also, within the first two weeks, I don’t think I could’ve worn this because it might’ve caused too much pressure on my incision. If you do end up buying something like this, buy it slightly too big.

I am now starting to nap with him and lie with him while he goes to sleep on my wedge pillow. With this close contact, I am wearing the helmet. He has tried to kick me in the head. I think I’ll wear this more over the next two weeks. I don't think that I will really need it after 6 weeks since my skull should be fused. I might follow up if it somehow becomes a game changer. For now, I will say it might not be worth the high price for this situation.

(Ribcap, I am not the model)

House preparation:

For this, I say do what you can. Deep cleaning is not something you’re gonna be able to do for the first few weeks. Vacuuming causes me a headache, and it’s hard to do without bending forward.

A fantastic gift suggestion is to ask for a house cleaning. If someone’s asking you what you need or your coworkers are asking what they can do. Maybe people could pull in and have a Cleaner come twice in the first month or something.

Brain engagement:

I think this is very ambitious, so I have doubts that it’s actually going to happen. But I got out my art supplies and have set them up in my room.

I’m surprised, but I really enjoyed painting right now. It brings me peace and relaxation. However, I’m told repeatedly that this does not count as a brain break because it requires concentration. I still need to lie quietly with my eyes closed. I feel like this is a neutral space, and I’ve enjoyed the time to have this practice.

I would say if you’re a busy parent, perhaps give yourself something that gives you peace and makes you feel like yourself. This probably should not include exercise.

I downloaded a lot of audiobooks.

Sadly, I have not been able to listen to any of the audiobooks. They have required too much concentration; it hurts my head. I have so many in a yearn for them. I’ve been told to start slowly and listen for five minutes and gradually increase it. I was not told this by a professional, so I’m gonna wait until my speech and brain injury team agrees with the suggestion.

I set up my oil diffuser in my room.

I have enjoyed this a lot, and I put it on as a routine for my forced relaxation/brain breaks.

Pet care:

I have no regrets about being prepared for pet care. I also can’t say that any of this was necessary. He gave me peace of mind.

Financial and worst-case scenario preparation

Luckily, all this was unnecessary.