Always Keep A Bag Packed

In the Fall of 2014, I learned a lesson. Fast! My Dad would begin, to have a lot of complications. And we'd be, in and out of the hospital, a lot! Most of the time, without any notice. Sometimes, we'd be going somewhere, and I'd have to call an ambulance. Sometimes, I'd drive my Dad to the ER. Sometimes, we'd call from home.

But it would all happen fast. And most of the trips, were the same. Long waits in the ER. Freezing. To be admitted, to the hospital. For at least a week. Most of the time, longer. And often times, I wasn't prepared. In the beginning. As the ambulance would drive away. I'd find a big bag. Throw in a blanket, sweatshirt, my tablet, some crochet, and maybe a snack.

As our unscheduled trips, would become more regular, I'd get organized. I finally realized, I needed to be ready, for anything. And everything! First, I'd find a nice sized bag. That would only be used, for the hospital.

 

I bought a bag, similar to this one. At Wal-Mart. For about $20. It would stay packed, from September 2014-March 2016. Yes, it still sits in the closet. I know! I should unpack it.

Inside, I'd put a bag of toiletries for my Dad. And one for me. For my Dad, I'd include his mouth rinse, his extra electric shaver, lotion, chapstick, his hair brush, a couple of extra ostomy bags, and rings.

In my bag, I'd have deodorant, lotion, toothbrush, toothpaste, some body spray, soap, my moisturizer, a razor, a brush, and hair elastics. The hospital, also supplied us, with a lot. Like towels, washcloths, soap, lotion, shampoo, mouthwash, and toothbrushes. And whatever else we needed. But sometimes, it's nice, to have the things that you are used to.

I'd make sure to pack some clothes too. For both my Dad and I. I'd pack my Dad, some t-shirts, a sweatshirt, some socks, his gloves, and a hat. I'd also pack some slippers for him. I would have a change of his clothes, in our car too. I couldn't take those down, until we were getting discharged. Because he would want to put them on. And try to go home.

For myself, I'd pack slippers, lots of socks, plenty of underwear, a few pairs of PJs, a couple of comfy shirts, some sweatpants, and tennis shoes. I'd have a couple of sweatshirts too! It was always cold, in the hospital. So all of my clothes, were for comfort and warmth. I didn't care, what I wore, while we were in the hospital.

 

I ALWAYS had, at least 2 blankets in my bag. One for each of us. And 2 pillows, in our car. The ER, was known, for being ice cold. And never having pillows. In the oncology ward, I didn't worry much about this. But my Dad, would often times, request his blankets from home. We'd bring those too.

I crochet. A lot! So I ALWAYS made sure, I had some sort of project, in my bag. Something, that I could pick up, and put down. Something that didn't take too much thought. Most of the time it was a small blanket. Or just a small project in general. But I'd have some yarn, and a crochet hook.

I'd also have a notebook, some pens, and usually a journal. I needed to be able to write things down. So this became essential for me!

I also packed a couple of new magazines. And at least one book. My Bible was in there too. The hospital we were at, had volunteers, that would deliver reading material to you. But it was nice, to have something, I had previously picked out. Something I was looking forward to reading. Many times, in the ER, my Dad was asleep. Usually due to a seizure. Or something else. And the room would be dark, and quiet. So I'd include a book light too. I was also lucky, to get a daily newspaper, from the hospital. They'd deliver it, with breakfast. For me, reading material was a must!

 

I also would include a couple of DVDs. In the oncology unit, they had DVD players, in every room. Many of these patients, spend a lengthy time, in the hospital. And my Dad liked to watch movies. So when I'd go to Wal-Mart, I'd always check out the $5 bin. And stick a couple in our bag. During our stay, in December 2014-January 2015, DVDs were a fun thing for us. My Dad, my Mom, and I, would spend our evenings, watching a new movie together.

 

I was lucky enough, to have 2 tablets, at the time. And I ALWAYS had one in my bag. Waiting for me. This was another way, I'd spend sleepless nights. Catching up on my favorite blogs, writing e-mails, blogging, updating family and friends on Facebook, and just hanging out online.

 

During most of our stays at the hospital, when my Dad was feeling better, we'd watch Youtube videos. Together. Laughing. Reminiscing about WWE wrestling. My Dad's favorite! I'd show him our blog. Later when we'd begun the Love for Blue Foundation, I'd show him this blog. Our T-shirt sales. My Etsy shop. It was nice to have.

 

Again, the hospital had a computer, for the oncology patients to use. In the Family Room. But it was nice, to get to just hangout, in our room. And watch silly videos.

 



 

 I also packed a variety of chargers. For our cell phones, tablet, my Dad's electric shaver, my laptop, our radio. Things I thought we'd need.

 

And I ALWAYS had snacks! Not that we really needed them. The staff at our hospital was AMAZING! And very quickly, they got to know, I was the one that stayed. All the time. And they would all, bring me snacks. The kitchen, would send me something. The different staff members, would bring me a bag of chips, a candy bar, some fruit. But it was nice to have some snacks, that I liked too.

 

These items, were ALWAYS in my bag! And it was, in an easy place, to get to. Which is important. it was packed, and ready to go. When we would get home, I'd refill my bag, and do laundry. This was also important. Many times, we were only home, for a week. My bag, always had to be ready to go!

 

This isn't everything, we'd take with us. Like I said, most of our hospital stays, were 7-10 days long. During the holidays, we were there, for over a month! After my Dad would be admitted, which usually happened in the afternoon, my Mom would get off of work. We'd probably been there since 7AM. My Mom would stay with my Dad, and I'd run home.

 

There, I'd quickly shower, and pick up, whatever else we needed. Usually, my Dad's radio, my laptop, a Saint that my Dad liked to have around, more blankets, little decorations for his room. We tried to make it a positive experience. But being prepared, was the key to everything. It made chaotic times, more manageable. Less stressful. And me, more available, to take care of my Dad. And his needs. ❤❤❤

Our Gentle Doctor

My Dad received all of his care, from one hospital. Different locations. Many doctors. More nurses, than I can sit and talk about. But one hospital. It was the best decision, we could have ever made.

Not only did it make it easier for us. It kept all of my Dad's doctors, on the same page. Everyone had access, to everything, all the time. If we were in the hospital, our doctors were very easy, to get in touch with. All our care, came from the same place. Including, our Homecare.

Along the way, you meet different people. In the Presbyterian organization, they work so well, as a team. Working together, for the patient. Mapping out, how your care will look. Taking every person's opinion, into consideration. And it works really well.

In the Fall of 2014, my Dad was scheduled to potentially have his stoma reversed. Chemo, was making him a little too weak, for the doctors liking. So there was a break, that was taken, halfway through his scheduled 16 treatments.

During this time, he'd receive radiation. And we heard all sorts of horror stories. But my Dad was optimistic. As always. He was ready, to attack this beast, growing inside him. We had an appointment, with the radiation team. And that is where we'd meet Dr. Garg.

An amazingly kind soul. His staff was truly, some of the kindest, that I've ever met! They made us feel so comfortable. And if you've ever had to have radiation, you know the initial appointment, can be rather lengthy.

We went in. The nurses were so kind, and helpful. Explaining everything in great detail. Allowing me, to help as much as possible. They knew, my Dad was most comfortable, when I was with him. After I'd help them, to get him settled in, another nurse, would walk me back to a conference room. Where I could wait. In comfort. With something to drink, and snack on.

I'd meet Dr. Garg first. While my Dad was being "marked" for his treatments. He'd explain to me, what was going to happen. What our schedule would look like. What I could expect. What I should look for, in terms of side effects. And assured me, he'd be right by our sides, the entire time.

Then he'd meet with my Dad and I. And explain everything, in great detail. Making sure, my Dad understood, everything he was saying. Talking to him, and reassuring him. He sat right in front of my Dad, held his hands, and assured him it was going to be OK.

Radiation, was very beneficial to my Dad. He didn't have any side effects. Nothing that they'd warned us about. Or anything we'd heard, from other patients. Dr. Garg, kept his word. And would be by our sides, the entire time. I don't think, there was ever a treatment, where he didn't come and talk to me. To let me know, how things were going.

My Dad was rather weak. By Fall 2014, he'd been through so much. And to go to his doctors' appointments, we'd take his wheelchair. I'd help him, to undress, and put on his hospital gown, before every treatment. The nurses would bring my Dad coffee. And once they'd taken him back, for his treatment, they'd come make sure I was OK.

It really made the entire experience, a positive one. But Dr. Garg, would be the one, that would bring us comfort. He'd talk us through, our entire treatment schedule. He'd answer all of our questions. He'd give me updates. Without me, having to track him down. He would bring me, the information, I'd need to know.

At my Dad's last appointment, he'd have a seizure. The staff was amazing! Dr. Garg, was right there, by our sides. Assuring me, that my Dad was OK. Which I knew. He'd had seizures, all my life. But Dr. Garg, wouldn't leave our side. He'd want to call an ambulance. So we could transport my Dad, from the Radiation Center, to the main hospital. I'd assure him, it would be best, if I'd take my Dad. He would be very disoriented, from the seizure. And would need me, by his side, when he started to "wake up" from the fog.

Dr. Garg, and 2 of his nurses, helped me get my Dad into our van. They'd secure him. And they'd get my cell phone number. Sure enough, they'd call ahead to the hospital for me. And they'd check in, with me, multiple times that afternoon. I'd receive a call from Dr. Garg, that evening, making sure we were OK. He knew, what he was reading from the charts. But he wanted to make sure we were OK. That we were receiving the care, that we should.

It was amazing! Months later, in February 2015, Dr. Garg would be the oncologist working at the hospital. On the weekend of my Dad's birthday. He would do everything he could, to make sure my Dad was comfortable. That we had everything we needed. And after talking to him, about a Surprise Birthday party, I had planned...he assured me, my Dad would be able to attend.

Dr. Garg, was just one of those doctors, that made you feel comfortable. He explained every single detail, to you. And always asked, if we had questions. When he could, he'd make things easier for us. Trying to provide our family, with everything we needed. At the very moment, we needed it.

And the amount of care, respect, and tenderness...that he showed my Dad. It is the thing, I will never forget. We were very blessed, with our medical team. And it's doctors, like Dr. Garg, that made the experience a little easier. We knew, we had a team behind us. And that no matter what, they were fighting for my Dad. To extend his life. To provide comfort. And to make sure, we were all OK.

I'm very grateful to Dr. Garg. And the care he provided. Not just the medical care. But the personal care, he gave my Dad. Even on my Dad's roughest days, he was an amazing doctor. Knowing, that it was the pain, and not my Dad...that was taking over. Thank You Dr. Garg! From the bottom of my heart. My family, appreciates everything you did for my Dad! ❤❤❤

Be Prepared

Over social media, and through e-mails, I get this question a lot. "How did you guys prepare, when you went out?" In terms of supplies, and being able to empty my Dad's ostomy bag. The reality is, it took a little trial and error. And it took experience. My Dad, wasn't someone who stayed home. So almost immediately following his surgery, we got prepared.

My first recommendation would be, get a bag. A tote bag, or backpack. And load up your supplies. We ALWAYS carried our bag with us. My Dad used a one piece system. But we always had 2 or 3 ostomy bags with us. And the same number of rings. We had a couple of washcloths. Paper towels. A few small trash bags. And a pair of scissors. It's important, to use the scissors just for this purpose. Nothing else!

In our bag, we also had a cylinder, that we received at the hospital. It was something the nurses used, to empty the bag, in the beginning. And it became a lifeline. We'd use it, to empty my Dad's ostomy bag. Whether it was in a restroom. Or sometimes, it happened in our vehicle. I'd recommend finding some sort of vessel, that works for you.

In our vehicle, we always carried a jug of water. And some foam soap, that we also received from the hospital. We also had a spare cylinder, and a small wash tub. We were so lucky, that the hospital supplied us, with so much stuff.

Also in our vehicle, we carried extra clothes. I'm pretty sure, if you are somewhat familiar with an ostomy bag, you've experienced a "blow up," before. And so did we. Even the most well planned outing, can have a hiccup. Or two. Sometimes three.

Make sure, to have supplies for yourself. In terms of hand sanitizer, wipes, and gloves (if you use them.) We never did. But I know, lots of people do. Make sure, to carry these things as well. Nothing is worse, than being stuck somewhere, without them. Imagine cleaning up your loved one. And realizing you can't clean your own hands?

We were also lucky enough, to have a large vehicle. A van. With window coverings, that made it a semi-private area. So if we did experience a "blow up," we could clean my Dad up. Without having to worry about people watching us. I know, not everyone has this luxury. But it was nice.

But then, my Dad was 81, when we were going through this. He struggled to do a lot for himself. Not just because of his age. But his failing health. If you're younger, more than likely, you'll be able to go to the restroom by yourself. To empty your bag. Or clean up, after a problem. But my Dad needed help.

Another thing to look for, are "Family Restrooms." We did this often. Most of the time, we'd look for one, the minute we got somewhere. Or we'd ask, if it was possible, for my Mom or I...to go with my Dad to the restroom. You'd surprised, at how many people are so helpful. In places that didn't have "Family Restrooms," many times a man, would clear out the restroom for us. We'd go to the "Handicap Stall," and do our business. Usually just taking 5 minutes or so.

My other big recommendation would be, monitor your ostomy output. Pay attention to when you eat, and when your bag needs to be emptied. Soon you'll notice a pattern. My Dad usually had about 10-20 minutes, after a meal. If we were going out, and had eaten, we'd wait. Until his ostomy, did it's thing. We'd empty the bag at home. And then head out.

If we were going out to eat, and knew we'd be out afterwards, we'd hangout at the restaurant a little longer. If we were going home, we knew, how much time we had. But you'll learn this. Over time, it will become easier. In our case, the pattern developed almost immediately. And it stood the same, through our entire journey.

I'd also recommend, getting to know your ostomy. Know what foods, create more output. Or a faster output. What foods, aggravate the situation. Once you become familiar, it will assist you in so many ways. For us, there were certain foods, that created a ton of gas. If my Dad ate them, we knew we had to "burb" the ostomy bag...pretty quickly. And often. Or else, we'd have a "blow up."

We also learned, during our "Chemo Week," things changed. The output was different. A different consistency, smell, and timing. We had to stay on top of things. But even then, "Chemo Week," had it's own schedule.

In the beginning, to learn about these things, I wrote everything down. I got a planner, that was used, just for this purpose. So we could learn, about the osotomy output. Soon, I saw all the patterns. It made planning outings, less daunting.

My biggest suggestion would be, just be prepared. Don't stay home, just because of the ostomy. There will be messes. No matter, how hard you plan. Just be prepared. Take a few towels with you, some extra clothes, and your supplies. But get out. Make your first few outings, short. Maybe close to home. And as you gain confidence, try going out, for longer periods of time.

As we got comfortable, we'd go out to eat. Which usually took us 2-3 hours. We'd take my Dad to the casino, for 6 or more hours. We'd go on road trips, shopping, to family get-togethers, visiting friends, and so much more.

My last suggestion is, don't leave your supplies in your vehicle. I know, that all these people say, the heat doesn't affect your supplies. But for us, it did. We noticed this, the first time a supply order, was delivered in the summer. While we were at chemo. And it sat in the heat, all day. Those bags, and rings, did not work well. In fact, prior to that, a bag would last 5 days. With that batch, we'd maybe get a day. Then one day, we left our supplies in the car, for a few hours in the afternoon. When we used those supplies, we had the same issue.

After that, we knew, that supplies had to come with us. Even if it was inside a store, to a family outing, wherever. We also made sure, that deliveries happened, when we were home. No one wants to have a "blow up," only to clean up and change...then have another. Because it's been exposed to the heat. Also, we live in the southwest. And it gets well over 100 degrees, in your car, during the summer.

No matter what the issue, I'd say, don't be afraid to go out. Have fun. But be prepared. Not just in terms of supplies. But prepared, that an accident will happen. Eventually, it will happen to you. But never let that stop you. You still have to live. And enjoy life. Just be prepared. ❤❤❤