While Danny was attending this conference, I was attempting to be involved in a cardiac research study. The study consisted of doing a pre and post op MRI of Tylers brain as well as a 1 year and 2.5 year neurological and psychological evaluation of him. That is pretty intensive. Can I just say Tyler didn't want to have anything to do with the evaluation and I have my opinions on the matter. There were times that I couldn't help but inwardly smile because I had a Phd Pyschologist who was so into her test but forgetting how to get a two year old or at least my two year old to cooperate.
Saying it nicely, Tyler is a stubborn little guy with an iron will. He will do things his way and in his timing. This is how the test went. "Tyler, will you make a train with these blocks just like I did?" says therapist in a pretty monotone voice. He would make it and than would look at me with a smile, seeking typical mommy words of encouragement. When I said, "good job" or smiled and clapped I would be reminded that I couldn't comment during the test. Well, guess how long my child was willing to do things with no encouragement? Did you guess it? Not long. No hip hip hoorays for mom and he was DONE! Sadly, the child got some of my genes and outsmarted the Phd in this case that no praise wasn't worth his time to do this study. I majored in human development and am now majoring in mommy and am certain that my method, although possible partly skewing the test, would have yielded better results.
I personally think that stripping him of Scott was not a good move either. Sure Scott might have tried to figure out some of the puzzles or commented when he shouldn't have but at least Tyler would have participated and they could have gotten some results. The neurologist treated him much different and got her eval done. She had Scott participate and Tyler was running down the hallway. He was a different man with her. One thing I learned is that you can't take life too seriously. At one point, I was changing Kira, Tyler just wanted to leave and Scott urgently needed to go potty. All I could do was laugh at life with three kids. It really is so great mixed with some craziness that makes it all that much more fun. I am glad I am not a mom that gets easily stressed out or I think I would have had a mental breakdown today. When I met up with Danny all I could do was laugh about it and be glad that our attempt for research was over.
So they said they will call to reschedule and I thought, "should we really attempt this two hour test again if it went this poorly?" It truly was a failed morning. The one good thing that happened is I saw a cardiologist who I love and has always been so interested in Tyler and his care. I also saw a Nurse who I love. The only things they told us is that Tyler has a little bit of poor tone and his leg relflex's aren't great, which is a no brainer. It isn't obvious to anyone, but he doesn't have the strength of Scott and doesn't have the circulation and feeling he should. He is missing his left ventricle and there are just certain things that aren't perfect because of that.
One of the doctors we saw that knows me and Tyler pretty well just kept telling them to let us go home and let Tyler go see the fishies he wanted to see. It was pretty funny. This doctor does research on drugs during surgery that could help cardiac kids and I don't think he is as interested in the neurological effects of cardiac conditions. My mind agrees with this type of thinking to an extent. Here is why. There is only so much you can do to change how certain things affect a child and what you can do about it.
Is Tyler as coordinated as Scott? No. Does he have as good as feel in his legs? No. Does he get tired more often? Yes. Does he get adequate oxygen to his brain? No. Can these things be fixed right now? No. Will they delay him or adversely affect him? Yes. What can you do about it? Therapy. Will it fix it 100%? No. Will having research give you these conclusions change what a child can or can't do or how the disease affects them? Yes and No. Yes that maybe you can do more therapy or be more prone to therapy. No in the fact that there isn't much that can be done to get them higher sats or better feeling in their legs. They just don't have a great heart. The kids might be doing the best their bodies can do.
A good therapist always asks the parent, "what are your expectations." My response was always, I want to help my child the most I can, however, also understand that his heart is what it is and he is who he is. I say that hours and hours of therapy might help some things but there are other things that he might just deal with and therapy can't fix. Therapists have always said how wonderful this outlook is because they hear parents say that therapy can fix all the problems, which isn't possible sometimes due to diseases or limitations. Sometimes when we focus so much on what our children could be doing better, we miss what they are doing well. I am so happy with how Tyler is doing. I understand that cardiac kids have residual issues they deal with. That is part of their disease.
Some of me agrees with the cardiologist to just let Tyler go play with the fishies. Let them be kids. Let them do everything a normal kid does. That might just be the best medicine. Part of me thinks I will do the study another time just because I feel bad that I didn't totally complete it. At least we ended up in the play room with some great volunteers and lots of toys. My kids love the play room. It is awesome!! I think I needed it more than anyone. To just sit and fill out my part of the research questionnaire while volunteers played cars with my kids. I need a room filled with volunteers and hundreds of toys at my house. It would make life blissful.
After UCSF we had a great meal at Johnny Rockets. Yummy. Scott was such a good boy today and so happy with his blue balloon, french fries and root beer. Soda is his treat when we go out to eat. It was nice having him so cuddly with me and Danny. He usually isn't that way but lately has given us extra hugs, kisses and I love you whispers in the ear. He is growing up too fast. We than went to the Lafayette Resevoir to drive RC Cars, enjoy the beautiful weather and play on the playground. Scott found a friend that we are going to get together with. I love how he loves playing with friends and how independent Tyler is at play grounds. We left so I could get to work. Danny took the kids to the park at my work and they played for another 2 hours where Scott mastered the monkey bars. Monkey bars are so hard the older you get. I can not do them anymore. Maybe that should be one of my goals. We came home, ate, bathed and time for bed.
On another note of research. Danny and I are helping a study get funded by giving feedback and being part of a parent panel. We really have not been asked to do much and were grateful we could help. It is on how parents respond to doctor/nurse/social worker interactions.
There are maybe 5 of us on the panel and one mom got crazy and started sending out emails to everyone about how we needed to be reimbursed and we are all experts in our fields and being exploited. How these researchers are taking all the money and exploiting us. It was totally crazy and after a couple of emails I really felt I needed to respond once she was dragging "all parents" feelings into the mix because they weren't my feelings at all.
Here is what I said about research and one of the reasons I will probably get suckered into going back to UCSF to try this study one more time with Tyler...
I am sorry that you feel this way and for the circumstances that have led to these feelings. I don't know all that has happened but hope that you find something that is fulfilling and allows you to give your services in the way that fills you. I just want you to know, that my husband and I have never felt exploited in anyway by providing feedback or giving of our time and opinion to help those at UCSF or in medicine.
Although, I don't know the heart of every researcher, I do know that the majority or researchers spend hours of their time writing, revising and putting research together knowing that nothing might come of it. They do it because they have a passion for it. Sometimes the research never gets funded, other times takes years and sometimes it is done and no significant results are formulated. However, they have helped peel away one layer at a time to get a little closer in helping kids, like my own, and their families have a better experience at the hospital or even a chance to live. Researchers who are in it for the money are crazy, because the majority of them are not going to become rich off of doing research.
If it wasn't for research, medicine wouldn't be where it is today. My two year old wouldn't be here with us. They would still be doing the most basic of surgeries. Medicines wouldn't be found.
Things that we take for granted, like being able to be with our kids for more than 15 minutes at a time in the hospital would probably not be possible. That is how much my mom stayed with my sister 30 years ago when UCSF wasn't family centered. Because of research that has shown the value of family centered healthcare, policies have been changed and we can now stay with our children 24 hours a day.
I am grateful for the parents along the way that were probably not paid or recognized in anyway, but thought that perhaps someone would benefit from their opinion or willingness to be part of an experimental drug, surgery or study. If only they could recognize how much it means to me that I am able to be involved in my child's care, can be by their bed and my interactions with providers are important. I hope that someday those parents that gave of their time, some of who gave their child will know how much their time or willingness to try something new was of value to me and my family. Kids ten years ago who had my sons condition were not surviving. It is because they were willing to do new procedures that doctors didn't know much about that has given thousands of kids today the chance at life. I hope that ten years from now surgeries are even better so the quality of kids lives with CHD's are that much better.
It makes me feel good to be able to give back in the smallest of ways so hopefully someone, somewhere will benefit. People have done that for me and this is my way or feeling I am giving back. Some people are blessed with wealth so they can fund projects, others are blessed with the ability to write or collaborate projects so they can put together proposals. Others are blessed with experiences to share with others. We have all been given different talents are together, in the world can make a difference.
Monetarily, my husband and I can't afford to sponsor or give much to support the funding for research like some can, but we can give of our time and experience and are grateful for that. It fills us in a way that money can't.
I understand and appreciate you sharing your opinion with us. I wanted to do the same so that you don't come away from this thinking we, as the parents panel, all feel the same way. We all do this for different reasons and in many ways this is very healing and filling for me. Maybe that is a selfish motive. But for me to get to the end of the day feeling I made a little difference makes my day a success.
Again, I hope that you are led to something that fills you in the same way that being a part of research or panels fills me. Heidi
The person over the study was so appreciative for the words because she didn't know how to respond and the person I sent it to I think realized that we are all in this for different reasons. She has done a lot to change legislation on certain things and done so much good for patient and family rights. I think that being as involved as she is becomes what feels like a full time job and led to feelings that she wasn't being compensated for her hours and hours and hours of time put in. She was very understanding of my response which I am so grateful for because I really didn't want to undercut her feelings, but just wanted these emails to the group to stop so we could all focus on getting this project up and going.
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