We Didn't Know We Had So Much to Learn

Hey everyone,

It’s been a while. Ive had so many ideas lately what things I want to share but haven’t had the time to actually sit down and write.

I want to tell you about our trip earlier this year. We were invited to a friends wedding in Florida. We took this opportunity to visit family and turn our wedding invitation into a mini vacation. Like any other mother I wanted to make sure my girls would have everything that they would need. Because of Jasmine’s condition, I always pack her medical supplies bag first. That way my head is clear unlike when I get to my own bag I’m throwing whatever comes out of the drawers and stuffing god knows what right in because by that point I’m exhausted and I want to sleep before we leave at the crack of dawn. I don’t know about you but this is ALWAYS how it happens at our house.

Anyways, the medical bag goes first. For days and sometimes weeks before we leave for a trip I call all of her suppliers and make sure that we will have what we need delivered before we leave. Sounds straight forward, but sometimes it turns into a lot of calls before hand. Of course I always over pack her supplies because you never know what could happen and when your traveling you cannot just stop into the local gas station and buy g-tube extensions or specialty medication that gets overnighted from California.

Other than the medical bag the rest of the packing is just as it is with any normal family. I pack the girls a bag with a million diapers and socks and as many outfits as I can find. I move on to washing all of my dirty clothes last minute because everything is always last minute when we are getting ready to leave.

There is something that we didn’t know we needed to prepare for.

Jasmine 

Day one of our trip and Jasmine is in great spirits playing with family and running around. I made sure to give her extra fluids and make sure she didn’t over exert herself. The next morning Jasmine woke up and I gave her the regular medications and formula that she gets everyday through her tube. Minutes later she starts vomiting wildly. Everything came back up and her poor body kept heaving. Seconds later (its been 5 minutes total) Jasmine goes dark. Yes, it happens that quick. She’s completely unconscious and completely unresponsive. At this point I calmly clean her up and start packing as I call her specialists in DC (remember we are in Florida on vacation)!!! We let her doctors know we will be heading to the ER and need to know where they recommend to go (NOT WELL PLANNED, see my post on why you should always carry an emergency letter). The whole time my mother is watching, completely HORRIFIED. I didn’t realize she had never seen Jasmine have an ammonia crisis.

I’ve been explaining this process to my family and friends for the last year. I’ve been trying to tell them what happens and how scary it is, but apparently its one of those things you have to see for yourself. We went to the nearest capable children’s hospital and learned very quickly that Jasmines condition is in fact very rare. The nurses were “googling” her condition before entering our room. It was the biggest eye opener. We didn’t know what kind of serious preparation needed to go into traveling with a chronically ill child. This trip turned into a learning experience not only for us but as a truly eye opening experience for my mom. Not that she didn’t understand when I told her Jasmine’s condition can be serious but finally she had witnessed the very terrifying experience of seeing it first hand. I think we all take things a little more seriously now.

Jasmine showing off her cool bracelet

Rare sight- Jasmine eating after getting fluids

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.