Why Every Child (and Adult) Should Have an Emergency Letter

In case of :

When I started looking around online I noticed that there isn’t clear information on this topic.

Our daughter has a Urea Cycle Disorder, which is a very serious medical condition. Her body cannot process proteins and when her body has too much protein her ammonia levels can become elevated which can cause brain swelling and put her in a coma. As everyone knows brain death can happen in a matter of minutes, even seconds so every moment counts in an emergency.

Jasmine admitted to the hospital

Not every child has a serious medical condition, but a lot of children have allergies and minor medical conditions that need to be known in case of an emergency. Please consider having an emergency letter ready in case your babysitter or family member or friend has to rush your child to the ER. Usually we keep a list of important numbers to call in case of an emergency, but does your babysitter or grandmother know the exact name of your child’s issues? Keep a list of all of the medications your child takes regularly because as you know they ask in an emergency. If you have an elderly relative please make sure this is done for each and every one with their diagnoses and medications, but also do this for yourself. You never know what could happen.

Have you ever been in a situation where a friend became sick and you needed to know their possible conditions or medications they take? Consider keeping an emergency letter on hand for every member of the house with an attached list of medications you or they regularly take and dosage information. Imagine something happened to you, would your family members know all of this critical information? If there was a quick letter and list to grab it could make a life saving difference.

Jasmine in the ER

Our daughter’s letter:

Her letter was prepared by her physician’s team and has the letterhead of the hospital we are seen at. It has the direct phone numbers for the clinic and on-call line. The letter begins with the nature of her condition and what she is at risk for. The letter is very direct about the seriousness of her illness. It has a list of symptoms and what to do if she needs immediate action. Our letter has the IV solution and list of initial labs to be taken should any emergency room be unsure.

When our daughter was first diagnosed they gave us this letter and we took it immediately to Staples to get copies and to get the copies laminated. (HINT HINT: don't be lazy, get it laminated!!!) My husband and I both have copies of this letter on our cell phones saved with a “favorites” label to make it easy to get to.

Her letter is part of our medical binder that we take to her appointments and record all of her hospitalizations as well as her test results. As you can imagine, if this is a frequent process for you or a loved one, it comes in handy so one person doesn’t have to be responsible for all of this information. 

How Comfortable are You With Puke?

Before Jasmine had a diagnosis she was puking just about everyday and most days were multiple times a day. She would wake up and eat her favorite, OATMEAL!! Then we would go on an outing (simple trip to the store) and she would almost always puke in the car. After several months of this I had gotten so accustomed to this. Even when she was a baby I had to wash out her car seat regularly because she puked in it all the time. The doctors would tell me as long as she was gaining weight it was probably something she would grow out of. I had no idea that her puking was getting so out of control until she was about 20 months and puking every single day.

Jasmine was puking so much that she would limit the things she would eat. We were down to oatmeal and French fries as the only acceptable items. Desperately trying to get my kid to eat I would try anything and everything. I tried to bribe, sneak and even force food into her mouth. She would wake in the middle of the night (3-4 am) and puke all over only to go right back to sleep a few minutes later.

At first I tried to get her to the bathroom. It’s the middle of the night, I wasn’t thinking… puke… my brain is tired. So I would grab her and try to make it to the bathroom. Why? I have no idea. After two or three times of cleaning the puke trail to the bathroom as jasmine falls blissfully back to sleep, I decided no more.

I am sad to say we had gotten so used to this that we would put her in between us in bed and situate her on towels. When she started heaving we would catch the puke with the towels and replace them with new ones.

We struggle daily with puking and the constant threat of Jasmine puking. Sometimes you can see it coming and there’s a brief minute warning. When I say minute I mean ONE SINGLE MINUTE= 60 second warning. Sometimes there is absolutely no face crinkle or widening of the eyes… there’s just a puke assault. It hits you in your face, in your chest, down your arms and legs and of course all over your hands.

I have gotten so used to this that its more of a “oh darn” moment. It sucks that it happened but it happens so much that I am in no way upset or even shocked. We pick everything up. Take off clothing. Rinse it out. Jasmine gets a quick bath and new clothes and we go back to our day.

Jasmine pukes for a variety of reasons mostly related to her condition. I’ve been told that OTC survivors have an almost hangover like experience in which they feel nauseous and vomit when their levels are high or elevated. I also believe that Jasmine pukes because of her stomach capacity. Sometimes it seems as though her feeding of 5 oz is no big deal and other days 5oz is WAY TOO MUCH. We resort to using the pump when we have a lot of puking days. The pump gradually pumps in her total feeding into smaller quantities over the course of an hour or hours depending on what she needs for the day. I wish I could say that we were going to see a day when this would stop but for my near future I just don’t think that’s the case. For now, everyday is a surprise and a challenge that we have to get out of bed to face head on, without complaint or disregard.

The Day our Lives Changed. What I Would Tell Myself to Do Differently.

I’ve decided to take the challenge and answer the question by TheMighty.com: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?

You’ve just had a baby. You loved when it was just you and Jasmine but now she has a sister, and that’s ok. You can make it work. The past few months have been rough because jasmine has been pretty sick and it has been getting worse. She skinny and she refuses to eat, but you’re doing your best.

As you’re sitting in the doctors office waiting on the results, the doctors are asking a lot of family history questions and you’re not sure what all of this means. You were just discharged from a different hospital yesterday after four days of test after test. You thought you left with just acid reflux medicine- wouldn’t that have been nice…..

The doctor comes in and tells you Jasmine will be admitted on the spot because her ammonia is well over 200. You’re thinking wait a minute she looks fine… He explains normal people with ammonia this high are likely in a coma. What’s ammonia? Don’t worry, you’ll be an expert in just a few short months. 

Wait a COMA? Take a deep breath.

Remember that she is alive and hasn’t suffered serious mental delays. You don’t know it now, but you are so lucky and Jasmine is so lucky that you found out when you did. She could be in much more serious trouble.

Jasmine and her baby sister at the hospital 

The next few hours of confirmations and test will define the rest of your life. Your life is about to change in ways that you can’t even understand right now. Even after months I would tell you its still going to be a hard step learning curve.  Stay strong.

Jasmine being transported by ambulance

First I would tell you, It’s ok, everything will be ok. Cry everyday if it makes you feel better! Don't be ashamed to cry. It’s ok to wonder if she will be able to remain as normal as possible. It’s ok to worry about things like quality of life. Relax because all things considered she should be just fine. It’s going to take a long time, but she’s alive and with a lot of work you can get her healthy.

Next I would tell you to ask all the questions you can and write everything down. Every time she gets hospitalized they ask the same questions and she’s going be there a lot in the next few months.

Educate everyone around you. Make sure early on that all of your family and friends are familiar with her condition and her needs. You’re going to need a break. Knowing you, you will push and push and try to do everything yourself, but you cant.

Try not to compare yourself or Jasmine to other kids and their situation.

As you read through Facebook you are only going to hurt yourself by reading what all of the other kids are doing while yours is stuck in the hospital getting a feeding tube put in. This is your new life, your new situation and you need to own it. The sooner the better cause you are only going to stress yourself out.

Last, don’t be surprised if you feel like you’re failing her everyday. Don’t be ashamed to ask for help and do it as soon as possible. Don’t be worried if she doesn’t get her medications at the exact second that you had planned in your head. Learn to accept that she isn’t going to eat like a normal child. Give yourself some slack cause you have two kids and this is a lot to handle for anyone.

Above all else, THANK GOD that she and you have made it this far. Count each day is as a blessing that you get to help her through this part of her life so she can grow and become a young woman. You will be there for her then too, but right now she depends on you to stay alive (a little more than most) but by the grace of God you’re going to see her through it. You are luckier than most, never forget it.

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!

OH GOD… Now I have to learn how to actually cook vegetables!!!

When I was growing up we loved frozen chicken nuggets and hot dogs and plates of pasta and meatballs. I absolutely LOVED mashed potatoes. As a mother I was feeding my daughter what I thought she needed. She had gotten skinny so naturally I was trying to sneak protein down her throat only to be discouraged when she puked later that night.

What I didn’t know was that her body couldn’t handle the protein. How was I supposed to know my daughter had a rare disorder and she couldn’t tolerate protein in large quantities? When I say large quantities, I’m talking about half of a hot dog. How could I have known?

Jasmine eating Veggie Straws (very low protein)

One of our first days after her diagnosis we had to learn how to count proteins. You think you know what proteins are right? Meat? NOPE!

There is some amount of protein in EVERYTHING. We had to learn that fruits have protein and vegetables have protein. It’s a small amount but when you have 6g of protein allowed for the whole day and an apple is 1g then you need to pay attention. A snack bag of Lays potato chips is 2g of protein. So a snack bag of chips is one whole meal allotment for her. Carbs have high protein, whole wheat (healthy right?), brown rice...too much protein!

As she grows she will be able to tolerate more protein. Her protein allowance is determined by her weight. There are some disorders that only allow 3-4g of protein intake for the rest of the patients life!!!

One thing the dietician suggested was to start journaling everything she ate or didn’t eat and keep track of the proteins and calories. For some reason I have found this to be very difficult. I cannot get her to eat most of the time and its depressing to write it down. It feels embarrassing for me to have to call the dietician constantly to tell him she’s still fighting to eat.

Most toddlers don't like vegetables to begin with but how in the world do you get your picky two year old, who doesn't eat because she associates it with puking, to eat vegetables? I guess I really need to learn to cook and be creative. If you ask my husband he would tell you cooking is definitely not my forte. 

Another thing we are having trouble with right now is our family’s anxiety about feeding our child. Some of our relatives are anxious and don’t want to feed her anything at all because they are unsure. Others are all too eager to shove whatever she wants down her throat. “Peanut butter has too much protein!” Sometimes I feel like I’m constantly spying on everyone as they try to feed her things.

There are people on the Urea Cycle Disorders Worldwide Facebook Page that have reassured me that this will get easier and that she will learn how to manage her protein intake on her own. That day is not today so I will take a deep breath, pray and continue to fight because my daughter needs me.