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. 

A Letter to My Daughter's Illness

Dear OTC,

You've only been in my life for a year and that year has been downright the worst year of my life. I never knew what it was like to truly fail or feel completely helpless before in my life. Up to this point I’ve been good at everything I have ever tried, maybe not great but at least I felt in control. You have tested my patience, strained my other relationships, and caused me to doubt myself. You have given me some of the worst days of my life so far. You have made me feel alienated from everyone and everything. You cause my daughter to struggle sometimes daily and all I can do is stand by and watch and try to comfort her.

Jasmine and her "friend" Olaf 

You came into my life at a bad time. We had just had our second child and you threatened to take my Jasmine. I didn’t know I could ever feel so divided like I had to choose which child to hold more tightly. You scared us into realizing just how serious her condition was. I did not know what it was like to hold my baby and fear for her life until I met you. You have shown me how fragile life can really be.

But this isn’t a sad story. You gave me answers (thank you) and brought me great pain. I live my life knowing everything happens for a reason and I know there is a reason you and I were introduced. As I have gotten to know you better I realize that you must be preparing me for something greater. If I can handle this then I can handle anything. Everyday still feels like a roller coaster but we are learning together. Above all, you have taught me how to keep a bright young girl healthy and how to see her truly thrive. Every bad day she has gives me the ability to thank God that I know what good days look like.

I am looking forward to a bright future.

For better or for worse you are now a part of our family.. now and forever…

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 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.