Thursday, May 14, 2015

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. 

Thursday, May 7, 2015

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…

Friday, May 1, 2015

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.