September 10, 2009

Desperation or Choice?

Posted in Cardiomyopathy, Health, Research and Development at 8:43 pm by bk2nocal

When your child gets sick, you will do just about anything to help them get better.  Sometimes this means watching them suffer through painful treatments and difficult procedures.  But, you do it in the hopes that after its all over, they will be better and no longer have to suffer whatever condition brought them to the hospital in the first place.  Sometimes, the treatments have side effects that cause equally bad health problems.  For example, I have met two children in the last three months who have contracted cardiomyopathy due to treatments for leukemia.  The medicine did away with their cancer, but in the process, it caused their hearts to enlarge and stop working well.  One of them contracted it when she was 2 and did fine on medication until earlier this year, when, at the age of 15, she had to have a heart transplant.  One of them is only two right now and just found out about the cardiomyopathy.  She is in remission and the cardiomyopathy seems to be controlled with the medication she is on for the time being.  But, it is yet another blow to a family that already had too much pain and illness in their young lives.

So, what do you do?  If you know that the medication can cause side effects (many of the medications M is on have some possibly serious side effects, including, ironically enough, injury to the heart itself), do you choose to not give it to them.  Of course not.  First of all, in most of these cases, they would not survive without the medication in the first place.  Second of all, with the medical advances being made, we can all hope that by the time serious problems arise, they will have solutions for those problems that are less invasive and less injurious then at present.  And hope is hope…even if sometimes that hope is tinged with fear, we choose hope.

So, it did not shock me to read in a Times article that families in Britain have begun to seek unregulated and untested stem cell treatments in China.  It is easy to get caught up in the hope, and lose sight of the possible damage.  And, at times, you wonder how much treatment restrictions are based on marketing decisions versus safety (see my prior post where I discussed the profitability gap) and how much is based on actual safety.  I know that Europe is a little less arduous in its regulatory control and cost of bringing items to market (hence the Berlin Heart being available for children there but not yet cleared in the US), but I’m sure there are still some issues with cost-benefit analysis driving medical advances.  Its just hard to know what to do, who to believe and how to proceed.

I think having a doctor you trust in these situations is of the utmost importance.  I know when I was going through the worst days with M in the hospital, I always felt like her transplant team had HER best interest in mind when making decisions.  I never felt like they gave me false hope, but I also felt like they provided me with fair assessments and all possible alternatives.  Because they are asking you to make life and death decisions based on their information, it is key to have people you totally trust giving you that information.  I think it would be worth changing doctors and even hospitals if you didn’t feel that level of trust.  Too many people stick with medical professionals because they feel “stuck,” not because they trust them.  This must be a horrible place to be.

We were lucky to end up where we did.  I had only a couple of incidents when I felt like treatment could have been better for M, and they were really driven by individuals and were remedied soon after.  I am so thankful we had and have the team of doctors and nurses working with us that we do.  I can honestly say that I can’t imagine having had a better experience in this process – its a horrible experience to have, but it is made so much better when you are surrounded by people who you can see really care and are willing to be there for you and your child.  It may be difficult, but if you are someone who has a sick child, don’t just settle for a doctor or staff you are not comfortable with – look for one that you feel is working and caring for your child and your family.  Its hard enough without additional stress.


September 8, 2009

Don’t Smoke Around Sick Kids!

Posted in Uncategorized at 7:09 pm by bk2nocal

I think this should go without saying, but obviously, I’m wrong.  I realize that addiction is difficult to deal with and nicotine is particularly tough, but think about how hard sick kids already have to work just to make it through the day…do they really deserve something else to deal with?  I have a friend who smokes and she is very good about smoking VERY little when she is around my daughter and usually only doing it right before she is going to shower so she won’t bring in smoke on her hair, her clothes, etc.  We all probably already know about second-hand smoke and its effects on children.  Infants often have lung development issues when exposed to second-hand smoke – asthma, wheezing, breathlessness.  As a parent of a child who already has some respiratory and heart issues, I can’t condone anyone ever exposing her to second-hand smoke – if someone lights up with her around, I will have to leave the area.  It may seem rude, but it has to be done.  We have a precious gift of a heart to take care of and I plan to do just that.

But a bigger issue for me, one that doesn’t seem to discussed as much, is third-hand smoke.  The Journal of the American Academy of Pediatrics had an article on this in late 2008 and American Scientist had a great article on it in January of this year.  This just means that going into places that have cigarette smoke in them (from people there before you, even if they are no longer there or no longer smoking) is bad for your child.  I am lucky to live in California where people can not smoke anywhere inside.  I am also lucky in that none of my immediate family or my husband’s immediate family smokes.  So, I don’t have to worry much about M being exposed to the toxins of cigarettes…but, I do feel like people need to be constantly reminded of the negatives of smoking on others and encouraged to quit.

I don’t want to sound preachy in this post, but my husband and I have both noticed some of the parents who smoke taking their children out to the smoking area with them.   So, obviously, it is something that could use a little chiding…leave your kids indoors when you go out to smoke.  Make sure that you change clothes and wash your hair if you’re going to be carrying a baby or small child around with you after smoking.  And if you are a caretaker for a sick child, whether that illness directly effects the lungs and heart or not, think about how strong they have to be just to make it through their illness and be strong enough to quit smoking for them!  I really feel strongly that life is hard enough for these kids, there is NO reason to ever do anything to make it more difficult for them health-wise.

Some additional articles on third-hand smoke:

NY Times – A New Cigarette Hazard

VOA News – Lingering ‘Third-Hand’ Cigarette Smoke Endangers Children

And some resources to help you quit smoking if that is what you need: – Free Resources to Help You Quit

American Lung Association – Quit Smoking – Quit Smoking

September 7, 2009

A Little Reminder…

Posted in Habits, Health at 1:17 pm by bk2nocal

I was reading one of the travel blogs I am subscribed to this morning (a way of escaping without being able to really travel right now) and it referred to an article, “Reminding Myself of What I Love”.  I thought it would be a valuable reminder to put on this blog as well.  It is very easy when you have a chronically ill child to forget the things you love.  I know that my days have been taken over by the administering of meds four to six times a day, taking blood pressure twice a day, taking temperature twice a day, keeping track of intake and output.  It can quickly become a grind.  And when it is an infant that is sick, all of this just gets piled on top of breastfeeding or formula mixing, diaper changes, baths, and tummy time.  Pretty soon, one might begin to feel more like a nursemaid then a person.  So, I think its valuable to take a step back and, as the article says, remind yourself of what you love.  Take some time to think about who you were before your child came along, before your child ended up in the hospital, before your child needed so much care at home…and figure out which of those things you can fit back in your life.

For my list, a few of the things I can pretty easily reincorporate them into my life, while some others are definitely going to be things I won’t be able to do on a regular basis for a while.  I encourage you to consider your own list and commit to working those you can into your schedule, even if its hard.  Remember, you have to take care of yourself in order to be a caretaker!


I really like to scrapbook when I do it.  But, I have this block against starting it.  It always feels like a big job to get going on a page or a project.  But, when I actually follow through with doing it, it feels great.  And looking back at the pages I create always makes me very happy.  This is something I CAN incorporate into the schedule.  It just requires me to be a little more flexible with my preparation and organization.  I need to just start a page without having everything figured out beforehand.  I think once I get going, I will definitely be hooked again.  And I have all these pictures of M’s hospital experience that need to be scrapbooked!

Music and Dance

I have been incorporating this a bit more with my four hour commute time.  I listen to the radio and my CDs.  But, I don’t have the same connection to music as I used to.  This is something from before I had M.  I used to go dancing all the time and loved music and learning new dance steps, etc.  I haven’t done this in a long, long time, but listening to the radio and CDs more often has reminded me of the happy feeling this used to give me.  I’m not sure how to incorporate dance, but music I can do.  I am going to make friends with Itunes and start burning CDs for my commutes.


I have always been a reader.  I love reading – books, magazines, blogs, etc.  This is something I haven’t really given up, but I could definitely devote more time to it.  I think it will set a good example for M if I am a reader.  I need to turn off the TV more often and read instead!


Yup, I like to play poker and go to casinos.  This is something that I will obviously not be able to do much in the near future.  Poker online is just not the same thing as in person, especially playing with friends.  We used to have a weekly game, but we moved and don’t have the same opportunities now.  Maybe we will be able to find someone when we move back to wherever our home will now be.


This one is hard.  I really miss being in shape and playing team sports or doing individual sports.  I swam, played water polo, dove, did gymnastics, played in a softball league, bowled in a league…I’ve done it all.  And I greatly miss doing those things, but its hard to get motivated because I’m so out of shape, it doesn’t seem as much fun anymore.  I know that is really defeatist thinking because you can’t get in shape until you start doing something to get in shape…so its a vicious circle.  But, I really do miss doing sports and fun types of exercise (tubing on the river, playing ultimate frisbee, etc.).  I need to MAKE myself start doing stuff to get back in shape and just get past the point where it starts to be fun again, and then I know I will be hooked.  This is another thing I really want to model for M – I want to be able to do sports with her and see her mom as fun and active.

Going to Festivals/Fairs/Exhibitions/Amusement Parks

These are just fun, outdoor, and leisurely activities that I love.  I don’t do them much anymore because (1) I’m a bad planner, so I often miss them, (2) I work a lot of weekends that they are open/fall on, and (3) my husband tends to think they are ridiculous.  But, I LOVE them.  The more local/cornier, the better.  They just seem to be places where you can really enjoy yourself without being judged.  I love people watching and these places are great for that.  I also just like to see people having a good time and these are great for that.  I really need to start following my Sunset and AAA magazines more closely and going with other family members or friends if my husband doesn’t want to go!  They are just too fun to miss out on.

So, there is a short list of some of the things I love and a little look into how I plan to incorporate them into my life despite having a six month old with a somewhat chronic condition.  It will be good for both of us if I can start doing things I really love more often!  I encourage you to figure out what it is you love and start doing some of those things more often as well!

September 3, 2009


Posted in Uncategorized at 8:58 pm by bk2nocal

One of the moms on the CCF listserv I’m on sent an article out and I thought I would share it here.  The NY Times recently had an article, “For Parents on NICU, Trauma May Last,” that discusses research that shows that parents who have babies in the NICU often suffer from Post-traumatic Stress Disorder after they bring the baby home.  The mom on the CCF listserv correctly pointed out that many of us who have had babies or even older children in the PICU (or like us, both in the NICU and then in the PICU) are also definitely at risk for this.  I think the important thing to take away from this article is realizing that even when your child gets out of the hospital and is home with you, there may be lasting psychological effects for which you should seek help.   The article is careful to point out something that may surprise some people – the PTSD is not correlated to the amount of time in the NICU or how sick the child was, but simply the parents’ coping style.  I think this is important to realize.

If you are someone dealing with a sick child or who has dealt with a sick child, you should pay attention to yourself and how YOU are feeling as much as you do your child.  It is difficult sometimes, but as the article clearly states, if parents allow themselves to get to the point where they are suffering from insomnia and/or depression, it has a very negative impact on the child.  So, although you may not see taking care of yourself the same way you see taking care of your child, it not only is as important, it IS a way of taking care of your child!

I know that sometimes I would feel guilty about leaving the hospital and returning to the RMH at night instead of sleeping there with M.  But, I am a light sleeper and I would wake up everytime someone came in or left the room, everytime a monitor went off, and everytime M made a noise.  I realized that if I got sick, not only would I not be able to stay overnight, but I would not even be able to visit M, so I made the decision to sacrifice staying there at night to insure that I was able to be there during the day and evening.

I am glad that researchers are starting to look at the way sick children can impact the parents.  Hopefully, insurance will cover treatment and parents will be willing to seek help when there are lasting effects from a child’s illness.  Know your coping style.  Know the signs that you are not coping well.  And be willing to seek help if it becomes apparent that you need it.  If you are a friend or family member of someone who has a sick child, be willing to listen to them, watch for signs they may need help and be supportive of them seeking help if they do need it.

Be well…your children need you!