Last week Nate had three doctor appointments at the children's hospital (2 hours away from our home). He usually has about 3 a month, but I was fortunate enough to be able to schedule all three of these for the same morning. Anyway, after the appointments we drew labs (12 vials! That's a record. We had seen a new specialist for the first time, and the neurologist had been concerned about last month's labs and wanted a repeat). Then we drove home, arriving about 30 minutes before the other kids got home from school. I checked my messages, saw a message from the new specialist's nurse, and called back. They got back to me within 20 minutes...(uh-oh). "We want to admit Nate."
Of course they do. Now that we're home.
The nurse continued, "But it's not urgent. You can drive back and admit him tonight, or you can double his water and admit him tomorrow."
That's thoughtful!! I told her I'd talk it over with Rusty and get back with her within two hours (he had just gone to get his cracked molar fixed). We decided to go in the morning. The van battery was shot, for one thing, so I needed him to drop us off, and it would really be nice to do that after the kids went to school rather than have him and the kids drive there and back in the dark that night. Rusty's night vision isn't the best. Plus, Hannah had a big event that I was supposed to attend, and with her anxiety...it was a huge relief to be able to keep up the "normal" routine and reassure her that this hospital trip was not too worrisome.
But best of all: I got to PACK!
Nate's been in and out of hospitals his whole life, ranging from ER trips to 5 weeks straight. I've gotten very good at "camping" in the hospital with him. I've done the Ronald McDonald houses, and they are wonderful, but once Nate got too big for the hospital's cribs and had to use hospital beds, I've never left him overnight (or really, more than an hour or two).
Hospital beds are plain dangerous for kids like Nate. He is technically quadriplegic in the sense that he doesn't have good control of his limbs and cannot sit up, crawl, walk... but boy, can he wiggle. Nate's constantly rocking, kicking, scooting around his bed, and the side rails are a joke. The gap between the upper and lower rails is huge, even with the seizure bumper pads. Nate is always swinging his legs out and getting stuck. Worse, as Nate gets bigger, the side rails are lower by comparison. Last fall, Nate was rocking and flipped himself over the armrest of the recliner, headfirst onto the floor. He could do the same in the hospital bed, if the head of the bed is elevated and he flips his legs over at the right point.
I'm seriously shocked and frustrated that they don't have some kind of solution. We can't be the only ones with this problem. I've had nurses help devise bumpers and slings and whatnot out of bedding, but I can't leave Nate alone for long. So, I move into Nate's room.
Aside from the bed problems, Nate needs my help. He can't push his own call light, he can't describe what's wrong, he can't stop the nurses from making mistakes during shift changes...I've prevented a lot of errors by simply being there. All. The. Time.
So, what do I pack? This trip was going to be long, I knew it, so I packed:
-3 full outfits for me (winter clothes- no matter the season, I'll be inactive and that room will feel cold)
-1 full outfit for Nate, and 2 pajama bottoms to help keep his legs warm while he wears the hospital gowns. Nate does not stay under the covers. Ever.
-a pair of tight-fitting socks (his AFO socks, actually) to keep that darn sat probe from coming off his toe so easily.
-some toys. The hospital only has a few chewable toys that Nate can't bite right through, and he didn't care for them last month during his last stay...(24 hour EEG)
-a soft blankie. Nate's comfort item, but honestly, I steal it once he's asleep because it's fleece and I sleep right under that drafty window...
-pjs and toiletries for me. Also my meds and wrist braces (carpal tunnel).
-those hand stitching and crocheting projects I started but didn't finish...gotta feel like I'm getting something accomplished!
-bills, checkbook, envelopes, stamps (to keep bills paid and fill my time)
-the laptop. Email, sort and label the digital photos, work on documents for Cub Scouts, blog, write the annual Christmas letter, catch up on our medical record keeping, anything else productive.
-ipod to play music for Nate and audiobooks for me.
-phone, charger
-downloaded ebooks onto one of the devices (I have several apps that check out ebooks and audiobooks for free with my library card)
-laundry soap (this was actually brought up to me later, once I discovered that the unit had a dedicated washer/dryer but no soap samples. Otherwise, I had planned to wash laundry in the Ronald McDonald family room, which is kind of a mini-house inside the hospital...love them!)
-instant oatmeal, dried fruit, nuts, etc. Since the doctor's rounds are anytime between 6 am to 1 pm, I like to have breakfast on hand. I usually go get lunch from the Ronald McDonald family room or the cafeteria, and pick up odds and ends to bring back and eat at Nate's bedside for dinner. I'm not going to be too active, and I'm super cheap, so I don't eat much in the hospital but I do try to eat healthy foods.
-big water bottle. I take several quick breaks across the day to walk across the unit and refill it.
-a few diapers, one catheter, just in case the trip to/from the hospital gets crazy long (weather, puking, pharmacy problems, etc...it's all happened)
-any meds that are uncommon. Even this huge hospital has had to occasionally borrow our home meds for the first day or two because they don't keep everything in stock.
-spare oxygen, especially if the hospital stay will start in the ER. You never know how long it'll be before he actually gets into a room. We ran out once, and when Nate was ready to discharge we realized that we didn't have enough to drive the two hours home. They couldn't lend us a tank, and our supplier didn't have any affiliates in the area, so we were stuck. Rusty had to drive all the way back home, get a tank, drive back, pick us up, and drive home again. Two hours each leg of the trip. That was a looooonnggg day.
-reusable bowl and spoon (I don't like to cook in disposable stuff, and I don't like waste) for the oatmeal, etc.
-dishcloth and a little dish soap.
I think that's everything. It all fit into a rolling suitcase. We were ready! I had Rusty bring up odds and ends when they visited over the weekend (nail clippers, the laundry soap, roasted pumpkin seeds, more yarn, etc) and I sent home things I didn't end up wanting to keep (finished projects, meds they didn't need to borrow, etc).
One week into our stay...so far, so good! I haven't even turned on the TV yet. We just listen to Pandora and audiobooks while doing lots of crocheting and sewing and napping...honestly, once the crisis is over, hospital stays are my mini-vacation. A break from the chaos of the house. It's a nice chance to just cuddle with Nate and get a mental and physical break from our busy crazy lives.
Rusty is a reallllly good sport, by the way. Everyone worries about how I'm doing, being in the hospital, when he's the one who is trying to juggle everything with the other three kids, and the house, and his job. I have a wonderful husband!!!
<3
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