HELP! Medical Supplies Are Taking Over the House

We were in the hospital for about three weeks total and two days after getting a G-Tube we were sent home. The very next day a pile of boxes arrived at our front door. Our new surprise collection of medical supplies had arrived. The supply company placed the order so we had no clue what we were getting. It was ok because we had no clue what we needed. We would have to find a whole new routine at home.

Jasmine and Her Feeding Pump

We have bins and bins of oral syringes, feeding pump bags, extension tubes, and cans of formula organized in our room. Month after month these items come in and I have to figure out what to do with them and where to put them. Don’t get me wrong, we use all of it, but when the big box comes to the house it’s all thrown in together. I don’t have space or time to dig through the latest box when I need something.

Every morning I bring down the supplies for the day, or at least I think I do until I have to make 10 trips back upstairs to get stuff. This has become my work out plan. We decided to get a system in place and we have one large bag with pockets that supplies a smaller day bag. The day bag holds everything we need for one day that can be grabbed and travel when we leave the house. Every night I measure out tomorrow’s medicine and formula powder to mix first thing in the morning. This is of course after everyone finally goes to sleep and I have time. If I forget or don’t get to it then I have to get up and do this while the kids are awake and it takes ten times longer!!!

The larger bag is usually a miss-matched collection of back up items in case I run out while I’m measuring things out. This way I don’t have to run upstairs, but reality is I still do. I forget SOMETHING, of course.

Jasmine and Her Tube

Now we are going to have to result to shelves in the basement or somewhere so that I can store extra supplies that we have stock piled. I always think about just giving them away but then I get nervous because you never know when you’re going to need them.

Let us know if you have any special medical supply storage ideas!

We used to use a bin, but I could never find anything!

When Jasmine came home, this was on set of medicines.

OH CRAP, The Feeding Tube Fell Out! What Do I Do?

So when you first come home with a g-tube they tell you that if the tube comes out or falls out or breaks you need to “stick something” in the hole and rush to the ER. They tell you this for the first three months. Then after that period they teach you how to put a new one in and your supply company sends you a back up tube.

Jasmines g-tube several days after placement

Replacement tube in hand you feel great! You can put a new one in no problem. But what happens when you run out of the replacement one and your kid pops two tubes in a mater of a few weeks? That’s what happened to us!

So as you know toddlers are busy little bees and constantly on the move. We have a VERY active toddler who unfortunately climbs everything all the time. She is up and down and from one thing to the next all day long. Imagine that your kid has a feeding tube port on the outside of their stomach and just cringe every time they slide off the couch on the stomach to get down.

This is the hole where the tube goes. 

So, what happens when it falls out? The hole begins to close almost immediately. You might be thinking.. big deal, just feed the kid and get a new one in when you can. Wrong, Jasmine’s condition requires her to eat every few hours or her levels could get high and cause her to get really sick. This is why the tube falling out is truly an emergency for us. The reason we have a tube is because we need it to keep our daughter healthy… and alive.

The replacement tube comes every three months and your insurance will not pay for a new one until the next billing cycle. These suckers cost $180!!!!!

THE STUFF THEY DON’T TELL YOU…

First, they don’t tell you WHAT to put in the hole when the tube comes out. I’ve learned that veteran moms get “g-tube saver kits” from Patchwork Peddler. It’s literally a sterile catheter that’s the same size as your kids tube and you put that in until you can get to the ER. (because what else would you shove into the open hole to your kids stomach?) Get one... get 5... keep one in the diaper bag and in your purse and in your car; who carries an extra tube around all the time?

Next, no one tells you to keep the top piece of the replacement tube packaging. It has codes on it. I’ve learned that you’re supposed to keep the codes and write down when the new tube goes in.

Then, no one told me to use the codes above and call the company who makes the tube. I’ve learned that within 30 days the company will replace the tube if it breaks.

Last, you’ve got about 20 minutes without plugging the hole to make it to an ER. Also, you need to call your local emergency rooms to see who carries the g-tube and who doesn’t. I’ve if you’re far away from the big children’s hospitals you may have a local hospital branch. Our local children’s hospital branch only carried certain sizes of the g-tube. Regular “adult” emergency rooms will not carry tubes and definitely will not carry pediatric sizes.

If the hole closes which is likely if you cannot make it in time your child will require another surgery to get it back in. Trust me when I say that 30 minutes to our local branch almost landed us back to the operating room. The emergency staff had to work VERY HARD to get my daughters tube back in. They had to DIG in the hole while she screamed. I don’t mean to be graphic but this is the reality. I told them do what they had to because if they didn’t get it in we would have had to leave and drive to the children’s hospital in the middle of the night.

Jasmine sleeping on the way home

Our Family and Some Holiday Confusion

If you have a kid then you know it’s hard to be a parent, it you have two kids, then you know its much harder than having just one. If you have more than two kids… God bless you cause I’m struggling with two!

Around the holidays and family parties you know that your kids are running around and you think you’re able to relax and let your family help. For some reason people want to just shove things into your child’s mouth. You want to swipe cookies?…. Awe that’s cute… You want candy? Sure, Don’t tell mom!

Here's some fun facts, consider: What did you feed your kids for the holidays? Jasmine can only have 2g of protein per meal. 

Mashed Potatoes - 4g Protein (1 Cup) 

Ham- 4.6g Protein (1 slice)

Sweet potato - 2.1g protein (1 cup)

Cookies?

Peanut Butter- 8g protein (in 2 tbsp)

Chocolate - 1.4g protein (1oz)

We have been visiting my hometown for the holidays and spending time with my family. This means there are a lot of questions about Jasmines “Condition”. You can explain and explain but there are things that parents with normal children just cant understand.

So why do I have family trying to talk her into eating cheese and crackers before dinner?

Cheese slice - 5g of protein (1 regular slice)

Our family is ALWAYS trying to HELP. And in their attempt to help they think that maybe her actions should just be punished away. She’s whining to much today and lashing out, so she needs to be punished. She puts everything in her mouth… she’s two. She isn’t sleeping like normal children, something must be wrong. Yes, she has a MEDICAL CONDITION. She is physically attached to a feeding pump most nights so its hard to let her just cry it out. Also, I get defensive because I, like every other (normal) parent in the world is trying my best to do what I need for my children.

Also no one quite understands her eating issues. Right now she is scared. For months every time she ate she would get sick. We are slowly trying to teach her that its OK and that as long as she eats what she is supposed to that she will not get sick. But how do you tell a two year old and make them understand? News flash…YOU DON’T. Thats why she has a FEEDING TUBE!!!

The old saying “they will eat when they are hungry” just isn’t the case with Jasmine.

I have had to come to terms with the fact that I can’t make her eat. This isn’t something that I can force.

Jasmine watching her "current favorite" movie Monsters Inc

Dealing with family for the holidays can be tough, and if you have kids, stopping your family from feeding them random crap can be hard. If your child has food allergies or sensitivities you need to pay very close attention. No resting during the holidays for you!

Our Decision to get a G-Tube

When you start talking about feeding tubes people get FREAKED out. Family and friends that watched our daughter (without a second thought) were now afraid to touch her and hold her. They are still scared to watch her for any length of time.

After our first 24 hour hospital stay and initial diagnosis,and after they explained in detail how dangerous her situation was, the doctor gently suggested that we discuss an option to learn more about a "g-tube".

Jasmine and her G-Tube

The G-Tube is a direct port from the outside to the inside to her stomach. We hook up a tube extension and push in what we need to. In the picture above I am giving her juice for calories and then flushing with water. It is important to keep the tube clean inside and out. 

It is important when kids like jasmine refuse to eat that they receive what they need or their body begins to break down their own protein. In her case when her body's protein floods her system her ammonia spikes. He told us that in extreme situations the tube could save her life.

We were sent home with two medications and special formula that she had to take or she would be in danger.

We tried everything, lots of mixing things with apple sauce, we tried to flavor things but she refused everything. 

My husband tried to reason with me "she's been refusing to eat for months" "this isn't going to happen over night". The first hospital we were admitted to kept using the term "malnourished" like I wasn't feeding my child. The truth is I fought (and still do) every single day to get my child to eat.

I felt so defeated. I felt like I had failed. I had failed her.

We returned the next morning to Childrens National Medical Center with our bags packed. We were ready to stay. My husband told me he wasn't letting her leave that hospital without a G-tube.  I couldn't imagine living with this stress of not being able to give her the medications she desperately needed. I agreed. It was the right thing for us to do.

Jasmine had to get a feeding tube through her nose and down into her stomach to get her new formula into her body because there was absolutely no way we could get her to drink it.(It tastes like flour water it's really gross by itself.) We tried every form of mixing it and adding flavor but she wasn't having it. We had tried to shove so many things down her throat that she had completely shut down. She pulled out her feeding tube five times the first day. We had to stand by and watch as the nurses hold her down and shove it back in each time. She screamed and I wanted to scream.

We had to wait for days to get the approval all the while we were holding our daughter down and forcing medications down her throat while she screamed bloody murder. We had to do this three times a day.

The morning of her surgery I drove as fast as I could to get to the hospital sick to my stomach that I would miss seeing my little girl before surgery. I left at 6 am but they came to get her early. I had to beg the ladies to let me back to see her before they took her.

I started to doubt my choice I started to worry about everything. She came out of her surgery and when she woke up she wanted me to hold her. My baby.

After all of the pain and getting her through the first weeks after her surgery, it's the best decision we have ever made. The "tube" as we call it comes with its own set of problems. It's a long and difficult learning curve and it's scary as hell, but at the end of the day we know that we can get her the medicines and formula that she needs to survive right now. She may have her tube for a few years or she might choose to keep it for life. All I know is until she learns how important it is for her to take her meds and formula, I know that I have one less thing to worry about.