Buckle Up

One of my daughter's diagnoses is Diabetes Insipidous (DI). DI is a rare condition that is not as common as Diabetes Melitus (Type 1 and 2 Diabetes). DI is characterized by excessive urination and intense thirst. This excessive urination can lead to dehydration in those affected. There are different types of DI, my daughter has central DI, most likely caused by her brain malformation. So one of the main issues with DI for her is that her body is unable to regulate her sodium levels. She moves between hypo- and hypernatremia (low and high sodium levels) frequently. Depending on how severe she may have to be hospitalized. 

My daughter's DI had been pretty well managed, only having issues when she had to have IV fluids. However, as of late she has been struggling. So depending on how low or high her sodium is she has to be hospitalized to regulate her sodium. 

One of the main culprits for causing issues with her sodium levels is being sick.  So far, she has been Rhino/Enterovirus positive twice. When my daughter has one  for these viral infections It cause s her to often become dehydrated as she is losing water due to having a fever, and being so congested that she is breathing through her mouth. These things lead to elevated sodium levels and a hospital stay.  Hence our current situation. 

We went in for routine labs and within an hour we got a call from her Endocrinologist saying that her sodium levels were elevated and she was going to need to be admitted. So here we are two days later inpatient, but getting back to normal. 

One thing that I am thankful for is that after 8 years of hospitalizations, I have learned to be a fierce advocate for my daughter and that it's OK to disagree with the treatment plan. There are times when the team is not taking all factors in consideration, and when you are the person that cares for this child day in and day out there are some things that you know that they may not. So I urge people, if it doesn't feel right, or if it seems like it's counter to what you know to be true for your child then speak up. When you do, you may find that your stays are shorter because there's less of a correction when the team is headed in the wrong direction. Most importantly remember that you are a part of the care team, so you do have a voice!

One of the hardest parts of our hospital stays is that my daughter has a twin brother who has to stay at home. It's so hard for him for us to be gone. Fortunately though, even at 8 years old he realizes that his sister needs to be in the hospital to get well. So we do video calls and I try to make sure he knows how much we miss him. Every time I talk to him his first question is if his sister is doing better, followed by when are we coming home! He's a trooper though. 

Over the years, I am getting better and better at preparing for these hospital stays. Some things I have learned that help me:

• If you can, keep a bag packed and ready to go. In this bag you want to have clothes for yourself and your child. A spare charger for you phone, tablet or whatever electronic device you might take with you. If you are able to keep the bag in the car, so it's with you should you get admitted from an appointment. 
• If you have time to pack before heading to the hospital, make sure to pack some slippers, snacks, tablet, laptop, chargers, crossword puzzle books if that's your thing. 
• Now this is a hard one, take some time for yourself. Take a nap, take a walk, go get a coffee in the cafeteria (or at Starbucks if your hospital has one like mine!)
• If it's overwhelming for you to contact everyone, designate a contact person. Contact that person and have that person contact others that need to be contacted. 

Finally, one of the most important lessons that I have learned over the years is that this time is about my daughter. She is my focus and while other people may want to check in with us, and want to know what is going on, I only have so much mental space and energy. I don't take calls if I don't feel like, I may not answer text messages, I do what I need to protect my piece and be available for my daughter. I generally will call my mom and her dad daily with an update. Other than that, I do what I can. 

I hope this was helpful with someone. What are your hospital experiences like? Do you have any tips to share? Fee free to leave a comment or send me an email.

Kara

Caretaker Beyond the Walls