Thursday, May 3, 2007

How Ty is right now and 10 things...

I'm skipping ahead to let you know what is happening with Ty right now.

We are at the hospital and have been since last Wednesday (April 26). He developed a fever - which is a big deal when your immune system is compromised - we came in for what we thought was "observation" and ended up staying 5 days. He had an infection that was resistant to antibiotics, but we finally have it under control and have begun his 4th cycle of Doxirubicin/DTIC. We should go home on Sunday, May 6. He will receive one more cycle in three weeks. This is our one shot. Because of the risk of permanent heart damage, he cannot have more than 5 cycles of this chemo.

Also something encouraging - his tumor is shrinking and is now 3 cm smaller. I will tell you more about that in another post.

I wanted to put out some of the things we have learned so far. I have a list of ten things that have really helped us.

1. Get to know God.

I am serious about this. Pray. A lot. Meditate. And listen.
I believe that praying can calm you and help you focus on answers, thoughts, and ideas that will help you.

2. Realize that your doctor is not God.

They are human and there are limits to their knowledge. Second opinions are okay, smart even. Every doctor is not an expert on what you're facing, but there may be one (or many) out there. I recommend that you seek them out.

3. Prioritize and then Simplify, Simplify, Simplify!

What is it that is really important to you or your family? Clear out the things that don't fit with that. You do not have to do and be it all. When the crisis is over, you can go back to being a Superhero.

4. Get educated, do your homework, speak the language.

I cannot stress this enough. It is difficult enough to make decisions in a crisis, but even worse if you do not understand the decisions you're making. After the news sinks in about what you're dealing with, you need to ask questions and get clarification.

-Pay attention to the people and information that find their way into your life. They may be able to offer you hope and help.
-Part of this is to explore options you discover.
Being skeptical is good and all, but there is nothing like desperation to open your mind to the "alternatives" out there.
-Be on the lookout for a mentor.
This was very helpful to me, I met someone who has been down this road with her son. She was amazing and offered information about resources that ultimately led us to Ty's current treatment.

5. Do not forget your spouse, family, and/or support system through this difficult time.

Bonds can be strengthened or damaged, make your choice. Give it your best.
We have struggled with this. We don't want our other children to resent their brother for the time he needs from us. Sacrifices are made (all around), but there can still be time for fun and memory making. We try to spend time with the kids one-on-one when we can. Sometimes we are just too tired, but there are basics we try to keep to. We read together every day, it's a big part of our family.

As a result of Tyler's tumor being in his abdomen, sitting is very uncomfortable and he spends much of his day lying down. Right now, he sleeps on a hospital bed in our family room. It may not make for beautiful decor, but this way he can still feel he is a part of the family. The girls get up on the bed with him and read books and play with toys.

Also, it's okay to take a mini vacation - without the sick family member. I'm not talking Disneyland, but the kids need to feel that it's still okay to have fun.

6. Find a way for someone to always be at the hospital when the patient is.

This is a personal one for me. I left Tyler with the nurse for four hours when he was two and when I got back, he was falling out of bed, hadn't been fed, or bathed-and no one had noticed. Since then, we have always had an adult with Ty - even at night.

It's a reality that mistakes happen in hospitals. You can minimize the risks by being there and asking lots of questions about what is being done or why things are being done. (I have kept Ty from receiving double doses twice just at this stay). This one can be hard to manage, but it's one you won't have any regrets from (except maybe your sore back - parent beds are not high in comfort).

7. Take time for yourself.

Do something that renews your spirit. Regularly: take a walk, talk with a friend, go out, read, write, soak in a tub, get a pedicure or massage, or some may even say go shopping, etc.
You can do this even at the hospital. Everyone needs a break. Be creative.
You cannot take care of someone if you're running on fumes - at least not for long.

A little note here about depression/anxiety medication - If you find yourself unable to deal with the stress or feeling extremely sad or anxious, please see your doctor. It's okay to take medication when you need it. Don't let it get to the point where you are run-down before you do something about it. If you're unable to function, how can you help anybody?

8. Be organized.

I don't mean in every aspect of your life - that's too tall an order right now. Just start with health insurance, hospital/medical bills, and medical information you collect.

I recommend that you have a notebook in which you jot down questions for the doctor or the thoughts and ideas that come to you about the situation. You have a lot going on right now, so write it down, and you won't forget it. Just remember to take the book with you.

I have a binder in which I keep Ty's scan reports, lab results, and information I collect from research. Ask for copies of everything.

I also have an insurance binder. In our family, we need a 3.5" binder. I use dividers (post-its) for each family member. I three-hole punch every Explanation of Benefits (EOB), Statement of Services Received, and bill I receive. I then staple them together by date of service (EOB on top). When I pay a bill, I write the date, the amount, and the method of payment on the EOB. One of the reasons to do this is so you can catch mistakes. Often, a provider may charge you for something which you are not responsible to pay. Make sure the amount your insurance company says you owe jives with what the provider says you owe. If they don't, then call the insurance company and ask about it. They can often clear things up. If I can't face this task, the papers go into the binder's front pocket to wait until I can.


This brings me to the bills: several hospitals and doctor's offices offer options for payment that usually don't include fees. Here are a couple, make sure to ask about them.
-Pay in 3 equal installments - can be scheduled to autopay from a credit card (so you don't have to remember)
-Pay 1/2 up front, then 3 equal payments of the balance
-Ask for a discount if you pay the entire balance - it can't hurt
-Ask if something can be written off by the provider, because sometimes they will do it
-If you are strapped financially - ask to speak to the social worker or the charity care coordinator, arrangements can be made


9. Ask your insurance company for a case manager.

Some companies offer this service. A case manager can help handle pre-authorization requests, claim disputes, and help you understand your insurance benefits. The less you have to deal with, the more time you'll have to do what you need and the less stress you will add to your life.


10. Accept help from family, friends, and neighbors

I don't mean that you need to allow everyone to bring you a casserole, but when people ask if you need anything, tell them what it is that would really help you. Is it food for your family, help with your kids, someone to talk to, help with housework, or a chance to get out? Tell them.

I know you're a very capable person, but it's okay to let someone help you. It's also good for others to have opportunites to provide help. One day, you will be able to help people again, but right now you are on the receiving end and that's okay.

***I'm sure there are more tips, but I have hospital brain so please help me by leaving your suggestions in the Comments.

1 comment:

Laura said...

Hi Corrie, still thinking about you this morning. I wanted to comment on your ten things now that I have a little time. I have spent far too much time living in hospitals and have learned many of the things you talk about. Here is my take on your 10.

1. Get to know God
You're right, this is #1. Having Chris has added a spiritual dimension to my life that I may not have developed without the opportunities I've had to humble myself and really rely on the Lord. He has given me precious glimpses of His infinite love for me and my son that have sustained me, strengthened my faith and let me know the beautiful spirit that resides in my son's body. What a gift it is to know that we are not alone in our struggles.

2. Realize that your doctor is not God.
I think we figured that one out when Chris was about 2 weeks old. We know now that doctors are there to advise us, but we are the ones that make all the decisions. We have to be the ones to decide which tests are important, when to do a blood pressure and when to let him sleep, when we'll risk dangerous meds and their duration, when to go ahead with surgery -and unfortunately we CANNOT DEFER the really tough decisions about life and it's quality to the doctors. This is perhaps the heaviest burden we carry. When do we say DNR? When do we say no vent or no CPAP and risk the consequences - having the faith that we have made the choice that our children and the Lord would have us make.

3. Prioritize then Simplify
I turn to survival mode. This is often good because all the fluff is immediatly removed and family and love are what is left.

4. Speak the language
Go the hospital library. Read what the docotrs read. If you don't understand, have them explain it to you until you do. Talk to other parents. Get second opinions.
I have read hundreds of medical abstacts before undergoing procedures so I know the risks and know which questions to ask. The doctors will acknowledge your concerns and respect you. Know how the machines work and know how to the procedures the nurses do. Be there to remind the staff of your child's specific history (where to put the IV, how they react to certain meds, which tape to use, etc.)

5. Don't forget spouse, kids and supports
This is tough. You are tag team parenting, trying to give your other kids your time when your spouse is at the hospital to give you a break. I know that when we finally get home after an extended stay, it always takes us a while to recover. My daughter, who had stopped sucking her thumb, is struggling now to stop two years later because she had such a hard time with me being away so much. We read every night too and try to keep all those secure routines (like church attendance) even in crisis.
We have often attended chuch at the hospital and have even used the Ronald McDonald house for our mini-vacations. Breaking up an intense situation at the hospital by bring our kids to the city to visit museums, the pool, parks, libraries, the zoo and other sites in between visits to the hospital room and taking their brother to the hospital play areas.
(the other 5 later)
Laura