Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Tips for Families planning a Make A Wish trip to Disneyworld

When we were planning our trip, I couldn’t find much online specifically aimed at families taking a Wish trip to Disneyworld. So many of the regular Disney planning things don’t pertain to Wish families, but I had so many questions about the things that would be unique to our trip. Hopefully, this document at least partially addresses that hole. 🙂

What our Wish trip included:

Travel there, travel back, and 5 days of park tickets. You can also typically request one or two special things – we requested tickets to Mickey’s Not So Scary Halloween Party. They say it’s a week trip (7 days), but it’s really just 6 nights with 2 travel days and 5 days to enjoy the trip.

We got a rental car – a van, actually. Some families instead made use of the Mears shuttle service. The car rental included carseats, but we brought our own for Teddy. We used their booster, which was clean and seemed nearly new.

We stayed at Give Kids the World Village, which includes free meals.

There are also a plethora of other tickets available for other experiences and places in the area – you’ll be given a list at checkin. Plan for check-in to take a few hours. Yeah.

This is an excellent resource for planning. It’s the GKTW Village Guide. It has a lot of details in it.  And this is their pre-trip section of their website.

You’ll also want to join the DISboards, and look in their disABILITIES section for lots of great info on Disney with disabilities, health problems, and Wish trips.

DisneyWorld:

Our Wish trip included 3 days of park hopper passes to Disney parks. This is not enough to see everything, so don’t try. Seriously don’t try. Also, Do *not* just show up at Disneyworld without a plan. Get a guidebook or at the very least read some websites to get a good sense of what is there and what you want to see and do. Make note of any time-sensitive plans you might have (parades, fireworks, other shows).

Your Wish trip includes a Genie pass – it’s a pass with Genie on it. This pass is your golden ticket. It plus your Make a Wish buttons and/or GKTW Village button gets you into every Fastpass line, and lets you bypass lines at Character greetings. This means that you can make your plans to ride certain rides without any concern for crowd levels, expected wait times, etc. You don’t need to worry about Fastpass reservations. Just pick what you want to do and go do it.

You’ll also notice, hopefully, that your Wish buttons typically get you better character experiences. Not always, but generally, we noticed the characters spent more time with our kids when they knew we were there with MAW. Sometimes, they shut down the line and let our kids have a little while in the room alone with the characters. Sometimes, they pulled other characters for group pictures (which NEVER HAPPENS outside of a Wish). It was awesome, and the character interactions were probably the highlight of the trip.

If you’re going to see a parade or fireworks, get there early. 30 minutes at least, an hour at least if you’re there during more crowded times. If you see people starting to line up for the parade – find your spot!

You also get a free Photopass CD. Use the Photopass photographers as much as you can (but then also have them take pictures with your camera, or take your own pictures – some of the photopass pictures are very disappointing). Find out before you go about Magic Shots – I totally forgot and am kind of mad at myself. 🙂

Universal Studios:

The “standard” wish trip includes 2 day park hopper passes to Universal Studios/Islands of Adventure. Universal is not a great place for the smaller kids. Teddy had two rides he could do, total in two parks, and one of those he got to do only because the employees were very very kind. He’s no 36 inches tall, even with shoes on. They knew it and I knew it. (But we were on a Wish trip and they let it slide.) It is great for older kids. Like, Wally is 10 and big for his age, and could ride everything and likes thrill rides – he was the only kid who really enjoyed Universal. That said, the treatment at Universal is amazing. The pass for Universal gets you a personal escort from the ride entrance around through back entrances and directly onto the ride. (Disney, you still have to wait a few minutes because you’re in the Fastpass line – Universal is really front-of-the-line access.) Universal also has very very few rides that don’t get you some degree of wet – from sopping wet to just a bit spit on. I don’t enjoy that at all.

We did get to meet several characters, which the kids loved, and we had a lovely lunch at Circus McGurkus.

Again, it’s not a good idea to show up without a plan, but we largely did Universal without a plan (because we totally ignored the plan we had) and it was OK. Lots of wasted time, though. Also, never split up and leave your cell phone with the other adult in your party. Finding your husband and other 2 kids is a great way to waste a few hours at Universal. 🙂

Sea World:

Sea World. OK, I have no issues with animals in captivity. But sea world was dirty and their employees were about what you’d expect for, I don’t know, our local theme park. The experience here just wasn’t as good. The pass you have gets you into their “fastpass” line, whatever it’s called, but that doesn’t really amount for much – or didn’t while we were there.

Give Kids The World Village:

The house that you stay in at GKTW is nice. It’s a duplex, and though we could sometimes hear our neighbors, we didn’t hear them often. The kitchen includes a full size fridge/freezer, a cooktop, a microwave, coffeemaker, blender, toaster, and dishwasher. There’s no housekeeping during your stay, but you don’t have to clean when you leave. There’s also a washer and dryer and free detergent (it’s Tide). Bathtub, shower, two bathrooms. Dressers. Super nice.

A Present Fairy visits every day with fun little presents. Some are kind of junky, some are awesome.

The pool is nice – zero-entry and they have PVC wheelchairs available for use.

The village has all sorts of fun things – characters come for greetings, there are organized activities, there are fun places to visit, a carousel, etc. Some of the activities and whatnot are really amazing, and some are kind of… awkwardly not amazing. But it’s fun!

The food is free with your meal card. The food from Katie’s Kitchen for lunch is REALLY REALLY good. The rest of the food is OK. The express breakfast is not so great, lol, but the breakfast at the Gingerbread house is pretty good. They had good grits and fresh waffles. 🙂 And there’s free ice cream basically all the time. And there’s pizza delivery.

General Tips:

All the parks have bag check. Don’t settle in for the day at the park until you’ve passed bag check. In other words, carry your bags until you get through bag check.

I have a unique way of packing our bags that made things much easier on us. I use a bag within bags system that makes finding things faster and easier. Our big backpack we left in the stroller at all times, and I caribinered it to the stroller to make it harder to steal. Inside was a large bag (the small wetbag I sell at Wallypop) full of diapers, diaper cream, wipes, and changing pad. Once through Bag Check, this bag went into the seatback pocket on the stroller for easy access. It was also caribinered in. Then also in the big backpack were a series of smaller bags: one for rags, one for First Aid items (bandaids, advil, Shout wipes, Bodyglide, moleskin, sunscreen), one for Entertainment (coloring books and crayons, bubbles, glow wands), etc.  I also brought the ipod in a waterproof case to which I attached a leash and a caribiner so I could clip it to the stroller. Sometimes T needs to chill out with the ipod, and I’m ok with that, but I didn’t want him dropping it. (I also had a caribiner leash for the sippy cup, and a few other leashes that came in handy for stuffed animals. 🙂 )   I also packed a smaller backpack that I never took off. It contained my money, my phone, and Teddy’s food and meds in a small lunchbag.

Stroller

This was our stroller. Giant caribiner there on the left, to hold misc items. Bag with diapers in it behind the seat (mickey bag). The other seat back held the fan and our daily plans. The panda bear is a stroller lock. We rented a stroller from Orlando Stroller rather than using the park strollers that we could have rented for free with our WIsh buttons. The rented stroller is more comfortable, reclines, and has storage. It was worth the money. You can also see the cheap children’s watch I zip tied to the stroller. We don’t wear watches, this was easier that getting out phones. Also I made a stroller tag (picture of McQueen with Teddy’s Stroller printed out and laminated) that I zip tied to the handle – both to allow us to easily identify our stroller, as well as to prevent anyone else from accidentally taking our stroller.

I did most of T’s diaper changes in the stroller. Found an empty corner, situated ourselves so nobody could see, and did it. Cleaner than changing tables in bathrooms.

I bought a stroller fan and it was the best money I’ve ever spent. It’s actually not a stroller fan, but a larger clip-on fan. We only used it for a few hours every day, but it was NICE TO HAVE.

The best thing I did was print out maps of the parks in advance. For Disney parks I used Kenny the Pirate’s maps (google him). They’re clear and better drawn than the official maps. And they have the name of each attraction written ON the attraction on the map, so you don’t have to use an annoying key. Then I circled the things we wanted to do, made note of any time-sensitive plans we had, and wrote down anything else I thought important… then laminated them. 🙂   A page protector would work just as well. Those maps were awesome.

Meals: Some days we wanted to leave GKTW before they were open for breakfast. Most days, we did not come back for lunch. A few times, we didn’t make it back for dinner. Walmart is just down the road – we stopped and picked up easy breakfast foods (instant oatmeal and frozen breakfast sandwiches), sandwich fixin’s, chips (for Teddy), granola bars, cheese sticks, and Gogurts. And a case of bottled water. I froze most of the water. Every day, I packed Teddy’s cooler with his meds and food and an ice pack. And I also packed a Family cooler, with 2 frozen water bottles, a sandwich for everyone who eats orally, gogurts, and cheese sticks. I also packed granola bars in the backpack. We pulled out the granola for midmorning snacks, had our sandwiches for lunch, snacked on chips or nuts or bought snacks in the afternoon, and bought dinner if we weren’t back at the Village. Bringing lunch cut down on our expenses and also gave the kids some “normal” food to eat. I do wish I’d done more planning for snacks and dinners, though – we ended up eating some pretty crappy foods. 🙂

We started out each day with 4 water bottles: 2 from the fridge, 2 frozen in the cooler, and 2 frozen and just loose in the backpack. This wasn’t nearly enough, we still bought drinks, but it was a good start.

While I’m talking about meals – we did want to have dinner at one of the restaurants at EPCOT. Most of the restaurants are buffet-style. Teddy, as a transplant recipient, cannot eat from buffets. (Of course he barely eats orally anyway, but he does chew on some foods and we like him to participate in mealtime with us.) When making advance dining reservations at Disney restaurants (and, I assume, Universal ones), there is a place to mark if you have food allergy concerns. Our concerns were not with allergies, but there wasn’t a “my kid can’t eat off the buffet” option, so I selected that. When we arrived, the chef came out to talk me, and I explained the problem, and she said it was not a problem at all to bring him food from the kitchen that had NOT been out to the buffet yet, which was exactly what we wanted. 🙂  (I had checked in advance to make sure this would be OK, so I knew going in that it would be fine. My understanding is that they can do this at ALL buffets. The Chef walked along the buffet with me and I pointed out food I thought he might enjoy, and she brought out his plate for us with fresh foods.)

I’ve read a few disappointing reports from Wish families who don’t feel that their trip was special. I don’t know what the difference is between our experience and theirs. I will say that getting over any shyness about wearing/using the special passes and buttons is key to getting special treatment. People don’t know you’re on a Wish trip if you’re not wearing your buttons. We also didn’t really EXPECT special treatment, so any time we got some, it was fun and special. It’s not really like people went out of their way to sprinkle Fairy Dust on us or anything… but when we gave people the opportunity to go out of their way for us, they often did.

Get the Stroller as Wheelchair pass. You can still park your stroller any time you want, but if it makes it easier, you can bring it in line. We liked having it in line to keep T from licking walls and to keep him a bit separated from other people and their germs. And, let’s face it, awesome seating at shows. But looking up in advance how each ride worked with wheelchairs might have been helpful. We got great seats at one show, for example, but it took 30 minutes to get out of there afterwards because there was only 1 elevator.

Be kind. Be kind. We saw several of the same Cast Members at Disney on our different days in different parks. They remembered us. Happily, they remembered us because we were kind and fun and polite. Not everyone at Disney is nice (guests). YOU be nice. Being nice and making friends is also your key to a better parade and fireworks experience. People WILL try to shove in at the last minute before parades. If you’ve befriended those around you, you form a loose “team” that prevents those last-minute shovers from shoving in in front of you. 🙂

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Emergency Preparedness for those with Medical Needs

My purpose here isn’t to discuss hard-core prepping. I’m not going to give you secrets to stockpiling your prescription meds in the event of widespread social unrest or an EMP. My purpose here is to help those with medical needs, or those with kids with medical needs, to prepare for those everyday emergencies, like bad weather, car accidents, medical emergencies, etc. For ease of writing, I’m going to proceed as though talking about kids with medical needs, but obviously the same principles would apply to adults.

I personally believe there’s no excuse to not be prepared for the unexpected. I’m the type that has Go Bags packed for every member of the family, that runs fire drills at our house, that has rendezvous points established with family members, and that keeps emergency supplies in the car. For my husband’s birthday this year, I’m putting together a Work Emergency Kit. 🙂  We’re prepared. But there’s no reason not to be. And, particularly when you have medical concerns to take into consideration, preparation for every day emergencies is even more important.

The first step is to take a minute to list everything your child needs to survive 24 or 48 hours.

For Teddy, that list would be:

Water, Salt, Meds, Feeding pump (though in a pinch we could make do without), feeding tube extensions, syringes of all sizes, diapers, a few changes of clothes, blended food.

Second, thinking through your daily life, list some emergencies that might arise. In my life, that list would include:

– Unexpected hospital admission
– Car accident leading to lots of extra time away from home that we weren’t planning for
– Bad weather heading to/from Iowa City leading to unexpectedly needing to stay overnight away from home
– Loss of power
– Loss of power combined with bad weather making it difficult to leave the house

For other families, that might include:

– Emergency at school
– Inability to get home from school or work
– Evacuation due to fire, expected hurricane, etc.
– Earthquake

 

Third, and this is deceptively simple, figure out how you’ll take care of all of those things listed in Step 1 if anything in Step 2 happens.

I’ll take one example from our list – needing to unexpectedly stay away from home on a clinic day.
Water: I always have his daily allotment of water with us on clinic days, and I always have two bottles of water for me, so in the event I needed a second day’s worth of water for him, I’d have it.
Salt: I bring his salt for clinic day, and don’t worry about bringing the salt for overnight or the next day. If we have an emergency, missing his salt for a day isn’t going to kill him.
Meds: I obviously bring his morning meds with us, since I have to give him those after labs at the hospital. I also bring his evening doses if the weather is iffy, just in case.
Feeding Pump and Gtube extensions: I bring his feeding pump and cord and two bags with me in what I call my “car bag” that I pack on clinic days – it’s a bag for stuff for the car. I also bring one of each type of feeding tube extension in the “Car bag” (in addition to whatever is floating around in my diaper bag, and in addition to the extensions I pack specifically for that day’s appointments – his bolus tube extension that goes in the small insulated bag with his food and the med extension that goes in the syringe holster with his meds).
Syringes: Since we use syringes throughout the day, I always have what we need with us.
Diapers and Clothes: It’s no secret that I keep a suitcase packed for a week in the hospital in my car at all times. So that takes care of clothes and food for me.
Food for Teddy: On clinic days, I bring Teddy’s entire day’s worth of food, and I also pack in the cooler a second day’s worth of food. This is both in the event of a travel emergency as well as in the event of an unexpected admission.
Misc Medical Supplies: I don’t go anywhere further than walking distance from my home with Teddy without bringing his diaper bag. In his diaper bag is a plastic zip close bag full of those bizarre things we almost never need. A catheter and tape, in case of Gtube breakage. A slip-tip syringe in case I need to flush his Gtube or in case it gets pulled out. Lubricant. Gauze. Tegaderm. A small first aid kit. Zip ties, velcro ties, and a few caribiners (which are useful for securing feeding pump bags in the car, or IV bags, etc.). Bleach wipes and hand disinfecting wipes. I used to carry a ton of emergency PD catheter supplies, as well, but we don’t need those any more.

 

Fourth, and this is the most important step here, actually DO the things you need to do to be prepared. Don’t just think about how you could be prepared. Actually do it. Actually go pack an emergency bag you could grab in a hurry if you needed to. Actually write a list of the things you’d need to grab that are not pack-in-advance-able and actually post it where you keep your medical supplies. Actually send a few days’ of meds along with your spouse to work just in case he gets stuck there overnight.

 

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How can I help?

I love this post. I particularly identify with this quote:

The times I have felt the most taken care of and touched by people’s service has been when they went ahead and just served us how they felt led. Many times after the fact we realize that it is exactly what we needed, even if it was just a drink from Starbucks or a run to the grocery store for us. These impact us more than you know. … If you feel led to serve a family, voice how you would like to serve them and then do it. Don’t wait on them to ask for it, because most likely they will not.

I know I personally have moved to asking people if I can do something specific that is within my ability to do and that I think they would appreciate; or that I would appreciate if I were in their place. “Can I bring you a coffee?” or “I’m going to the store this afternoon and would be happy to drop something by – what do you need from the store?” The person can still turn me down if it’s not a good fit (opening the door to, “is there something else you need?”) but I’m not putting it on them to come up with what they need.

This is partially because I’ve been so particularly touched by those who’ve messaged me while I’m in the hospital with Teddy, “I’m driving through Iowa City and I’d love to bring you something – what can I bring?” My answers have varied from Coffee to fresh fruit to french fries from McDonalds. It would feel awkward for me to send someone to the store on my behalf normally. I would not answer “is there anything I can do?” with “can you go to the grocery store and buy me some fresh fruit and some frozen Hot Pockets breakfast sandwiches.” Hello, bossy much? But when the question is phrased such that the person makes it clear they’re already planning to go to the store for me, but merely want to be directed in what specifically I’d like, it’s easier. (And people have generally figured out that what I mostly need when we’re in the hospital is provisions from outside the hospital, since I typically am not able to leave the building.)

 

And her #3 – Don’t Minimize. I’ve found that many parents of medical or special needs kids tend to talk more to other parents with their child’s same diagnosis, because that’s a safe place where most people will say something like “oh, crap” or “that sucks” instead of “oh, it’ll be fine.” At the same time, an “it’ll probably all be ok” response from these other parents-in-the-know is much more reassuring because it’s usually based on fact, not wishful thinking. I’ve learned there are people in my life with whom I don’t share a whole lot because it hurts to hear only denial (or blame) in return. Don’t be that person.

 

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Trauma and medical needs, helping kids and parents cope

This morning, I finally sat down to put figurative pen to paper on a blog post about the tough choices parents face during difficult or painful medical procedures.

This afternoon, I spent some quality time with my Feedly backlog and found this article on helping kids deal with trauma. “Trauma Protection for Kids with Special Needs | Different Dream” http://feedly.com/k/17HaRUJ

That was serendipity. 🙂

Teddy’s had more painful things done to him than I care to remember. Most while awake. Most necessary, and most without viable alternatives. It is an unfortunate fact of life for many medical needs kiddos.

And many parents of these kids struggle to figure out their role during these times. Do they stay? Do they leave? Do they help? Do they observe?

If you leave, the thinking goes, your role is one of comforter. Your child doesn’t associate you with the pain, just with the comfort. But then does your child feel abandoned? Are you leaving them just when they need you most? Will they become clingy, fearful that every time you leave the room, someone will hurt them?

If you stay, you can provide support for your child during the procedure. But then are you participating in the hurt? In helping hold your child still, or even simply observing the hurt, are you teaching them that they can’t always trust you to keep them safe?

No easy choices there.

Personally, I have always opted to participate in whatever’s going on. I can hold him firmly but gently, snuggling and kissing in addition to immobilizing. I personally feel like this is a better option than having only medical staff holding him. I can talk him through the procedure, giving voice to what he is probably thinking. And I can be right there with a big hug, snuggle, tuck into the carrier, clothes, blanket, bubbles, whatever he seems to need in the moment the procedure is finished.

We rely on Child Life a lot, too. I feel that I’m better at empathy and they’re better at entertainment. 🙂

Then, though the techniques in the linked article are meant for older kids, I loved loved finding that I’m already doing what they recommend to help kids deal with trauma. Teddy and I talk about what’s going to happen to him in advance, and I talk to him during any procedure, too. I talk to him about what’s happening factually, and I talk to him about how he may be feeling. “You dont like it when she holds your arm down. She holds it like that to keep it nice and still so we can be finished sooner. I know – ouchie ouchie! I hate the tourniquet, too. It’s so tight! You want to take it off. I’m sorry. We’ll let you pull it off when we’re finished.”

As he gets older, we’ll start introducing some therapeutic play, too. He’s already stolen enough tourniquets to open up a small clinic. 🙂

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Helping Someone Who Is In The Hospital With A Sick Kid

Do you have a friend facing an unexpected (or planned) hospital stay with a child? Wondering what you can do to help them? Or are YOU facing a hospital stay with your child, and feeling too overwhelmed to come up with something to suggest when others ask how they can help you?

Here are some ideas of things I’ve done for others, things others have done for us, and things that just sound nice.

  • Bring Food.
    Real, Homecooked meals
    Snacks
    Chocolate
    Coffee
    Vegetables (vegetables are so hard to get in the hospital)
    Fresh Fruits
    Flavored Drinks, or pop if the person drinks pop.
    French Fries (seriously, we’re in for about a week and I start craving french fries from McD’s)
  • Gift Cards
    Places that deliver food to the hospital
    Hospital system food
    Places not owned by hospital but within the hospital (coffee shop, book store)
    Gas Stations
    Hospital hair salon
    Other hospital services that are “extras” like that (UIHC has massage stations, for example)
  • Company.
  • Unexpected surprises. Of any sort.
  • Treats for the child.
    I’ve been surprised that most of the hospital gowns I sell are actually purchased by friends or relatives, not parents, as a fun surprise for the hospitalized child.
    Books
    Craft or activity kits
    A new movie or game
    If appropriate, bringing your kids for a visit, with maybe a board game or group-play video game
  • Mail. I love getting mail when I’m in the hospital.
  • Texts or email just to check in.
  • Books, magazines (or gift card to hospital gift shop to buy one for themself)
  • Use of a laptop, kindle, ipad, or similar if they don’t have one
  • Offering to hang out with the child so the parent can run to the store, go for a walk, go outside, go somewhere and cry, whatever.
  • Help at Home
    Pet Care
    Promises to shovel snow if needed, or mow grass if needed. (in our case, Randy can obviously do these things himself when I’m in with Teddy, but he also has to work full time and be a single parent and he also wants to come visit us on the weekends and it’s just plain NICER for him to not have to worry about these things.)
    Meals for parent/siblings at home
    Light housekeeping
    Ferrying mail between home and hospital
    Helping with other kids (taking them to lessons or classes, taking to/picking up from school, taking on fun field trips, providing before/after school care, etc.)
  • And today, in a group I’m in, someone suggested mini bottles of liquor. Which are of course forbidden in hospitals, and aren’t appropriate for everyone, but I’ve had days when an amaretto and coke would have been a nice way to finish out the evening.
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The Gtube

Looking at site stats, a goodly number of people end up here searching for info about Gtubes.

So let’s discuss.

The Gtube is essentially a hole that leads from the outside of Teddy’s tummy into the inside of his stomach. The hole is filled by a silicone device that allows us to put food and medicine directly into his stomach instead of through his mouth.

Teddy CAN eat. He doesn’t have any physical problem with eating. Kidney disease does make you less likely to WANT to eat, and I think his prematurity plays a role here, too – he just still doesn’t have particularly strong oral muscles and he doesn’t eat enthusiastically, vigorously, or for very long.

He wasn’t growing and it was a daily struggle to feed him enough food. Our days revolved around getting the baby to eat. I wasn’t enjoying my kid, because I was too busy worrying about how I was going to get him to eat.

I honestly didn’t resist the Gtube much. I know a lot of parents struggle with this decision, which is, I suspect, why people are out searching for information and landing here. I had already read several research studies on nutrition in infants and children with renal failure that all suggested that a feeding tube was nearly universally needed in these kids. After our nephrologist suggested we might consider one, I asked a few online friends of kidney babies about their experiences and each one said that they didn’t regret it, and they wished they’d gotten it sooner. Honestly, these two things made my decision so much easier, and I consented to the surgery a few days later.

I love it. I’ve joked several times that I could practically write love sonnets about the thing. I have never once had negative feelings about his tube. Not once. I do not regret getting it. It’s not necessarily easy. It’s kind of a hassle. It is just one more thing to deal with. But… it keeps him alive.

Because of his G-tube:

– He doesn’t have to taste the numerous nasty medicine he takes twice daily.

– We don’t have unpleasantness over medicines.

– I don’t have to spend the whole day trying to force him to eat.

– He can enjoy eating. For a kid who seems medically destined to have issues with eating (from the kidney disease), the Gtube is allowing him, for right now, to still see eating as a pleasurable activity. He eats what he wants, when he wants. If he doesn’t feel like eating, he’s tired, he’s nauseous, etc., then his food goes thru the tube.

– He can stay hydrated when he’s ill.

Don’t get me wrong. A Gtube is a last resort. Try everything else first. But if everything else isn’t working… a Gtube can be a wonderful thing. 🙂   (for more info, check out Feeding Tube Awareness’s website.)

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Room tour #2

 

This is the inside of the closet. No clothes. On the right is this shelf, and straight in and on the left is mostly empty, planning to store boxes of dialysis supplies there. (Same with under the bed.)

Tour3

Tour4

I have to explain “procedure table.” It’s obviously a TV Tray. But it works.

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Schedule

I have designated Friday as Supplies Day. Fridays, I check my stock of Tegaderms and other PD Cath dressing supplies. I check my feeding tube extension inventory. Syringes. And, of course, drugs.

(Let me interrupt to say that today, Wally said to me, “I thought drugs were just for grownups.” Note to self: work on synonyms, review Just Say No concept.)

Three of Teddy’s Rx expire every 14 days. This last hospital stay, I was finally able to get them on the same schedule. Yay!  One of them expires monthly. Then the other four are dispensed in commercial bottles, and they expire at random.

On my calendar, I have an appointment to call the pharmacy every other week to refill the four Rx that expire. The other four, I do some rough calculations to determine when I will need a refill, and then add that Rx to my calendar, as well.  Since the amount he takes changes frequently, my estimate isn’t always right. So each Friday, I take stock and make sure I have enough for the upcoming week.

I also have an appointment in my calendar every four weeks to call home health for another box of feeding pump bags – there are 30 per box, and I aim to refill when I have 8-10 remaining.

And, at Friday’s dressing change, I make note of my level of supplies for PD Cath items and shoot our nurse an email if I will need more of something when I see them.

Having it in the calendar helps me to not forget. And, of course, I like having things on a predictable schedule – it keeps me organized!

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Room Tour #1

As we settled in here at home, during those wild and crazy three months between admits, I slowly have been making changes to the room that used to be Wally’s room, but is now about 50% Teddy’s stuff, 30% older kids’ stuff, and 20% my stuff. I try to always keep dialysis needs in the back of my head while moving things around in here. I didn’t photograph the four dressers lining the walls (Wally’s, Genna’s, Teddy’s clothes and stuff, Teddy’s diapers), or the other set of shelves (part toys, part baby stuff), or the shoe shelf, or the TV (38 inch, I think? Big enough that I can see it reasonably decent without glasses during middle of the night pumping sessions).

Tour1

So here we have my newest addition – shelves and a fridge. He has enough fridge meds now that it’s easier to have them all together here, and it’s easier to keep the milk in here, too. On top of the fridge, in the box labeled Box F is currently some misc stuff from Home Health that I need to keep handy for when the nurse comes. Normally, my travel cooler lives there. Box G is dirty bottles and syringes, in the wash tub and with the rinse tub underneath. On the top shelf next to the fridge is the drying rack for bottles, and the box labeled Box E contains nipples and bottle lids of all types.

Box A is misc. daily use items – blood pressure cuff, stethoscope, BP log, thermometer, scissors, nonsterile gauze. Box B is current day’s meds as well as Gtube extensions and feeding syringes. Box C is all of the meds plus clean syringes. Box D is empty bottles for the breastpump.

The Misc shelf currently holds IV infusion supplies.

Tour2

The pumping station. Comfy chair. Remotes. Shelf with water, phones, books, knitting, and also a jar of peanuts. 🙂

(Before you start judging on the TV… first ask yourself if you’ve ever exclusively pumped for any baby, ever, particularly at least twice during the middle of the night. No? Didn’t think so.)

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Exclusively Pumping

I am not an expert. I’m not a Lactation Consultant (though I have found most LC’s to be less than super helpful about the practicalities of exclusive pumping). I’m just a mom who’s been doing this for about 6 months now.

And most of this information is stuff I found elsewhere, or stuff that was told to me by others, most notably Megan G and Sarah C. This is a random collection of information.

  • Personally, I have to pump at least once, preferably twice, overnight. Prolactin levels are evidently higher overnight, plus not having those long stretches without emptying my breasts help keeps my supply up. Women who are not constantly tottering on the edge of not having enough milk can probably drop one or even all overnight sessions.
  • If I don’t get a certain minimum amount during the 3 or 4 AM session, and if my breasts still feel full but nothing more is coming out, I will stop after 30 minutes, sleep for another 30 minutes, and pump again for another 30 minutes. If I need to, I’ll do this again.
  • Hand express after pumping to get the rest of the milk out. This was a game changer for me. I can sometimes get as much as 30-50 ml more by hand expressing.
  • My detailed records are my best friend. Not everyone has to keep a spreadsheet and make charts with their pumping data, but it would be useful to most people to track when they pumped, how long they pumped, and how much they got. Over the course of a week or two, you can start to notice trends.
  • Massage and compress while pumping, take a break while pumping to massage, and massage before pumping.
  • Pump in the car! I mean, you’re just sitting there anyway, right?
  • Zone out. Don’t look at the bottles, think about how much you’re getting, etc. Sleep if you can. Watch NetFlix, knit. I sometimes read to my kids, or we do some schoolwork. I sit on the bed and play with Teddy. ANYTHING except think about pumping. All the advice you read for Pumping At Work moms is to picture your baby, picture milk flowing, picture water fountains, think about your baby nursing, etc. Most of the EP moms I’ve talked to say that this does NOT work for them. Thinking of my baby, my milk, etc., probably just triggers deep emotions of sadness over the fact that I’m not nursing him, and that doesn’t lead to easy let-downs. I just don’t think of it.
  • Try longer sessions. LC’s consistently suggest that pumping sessions should only last 20 minutes. As you get accustomed to pumping, you can bump that up and get multiple let-downs. I was a one-let-down-per-session girl when I was just pumping 20-30 minutes at a time. If I go 60 minutes, I usually get 3-4. And my breasts did NOT protest and move to a new state like I thought they might.
  • Get a good pump. Hospital grade. Rent one first if you want, then do the math on renting vs buying. I did not rent one, I just bought what I had used in the NICU because I already knew I liked it, and it was cheaper, over the course of a year, to buy.
  • If keeping your baby on breastmilk is important to you and you’re struggling, find some lactating friends and see if they’ll pump a bit for you.
  • It is somewhat normal for your nipples to look swollen and misshapen after you pump. It doesn’t happen to everyone, evidently, but don’t be alarmed at how your boobs look when you take the pump off.

Increasing Supply:

I personally have the most success with MANUAL means of increasing my supply. Pumping more often, pumping longer, power pumping (10 on/10 off for an hour), pumping 10 minutes every 30-60 minutes around the clock for a day or two, etc. When I start having low supply, I START addressing the problem by pumping every hour during the day and making sure to be diligent about getting up at night. I do NOT get discouraged when those pumping sessions don’t yield much milk – they are merely putting in an order.

Then I add supplements.

Teas have never done much for me, even fresh herb teas.

However, placenta pills (from my placenta) have been useful. Fresh fenugreek (buy the seed and crush it and put it in capsules). Brewer’s Yeast (same thing – put it in capsules). Goat’s Rue, Milk Thistle.

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