Tuesday, February 22, 2011

Two 'B' Words that are Causing Me Emotional Strain

There are two 'B' words that are constantly on my mind and are causing me some serious emotional strain. Briefs and Baclofen. You may wonder what's the big deal about briefs. Well, it is a big deal when your child is 7 years old and has to wear these large plastic diaper like products that resemble a small garbage bag and seem very uncomfortable. Since Faith has been growing (I know that's a good thing) she has finally outgrown her size six diapers which is the largest size they make.

She really doesn't seem to mind them but it pains me each time I put her in one. Briefs seem so much more final than diapers - like she will be wearing them forever and I don't know if I'll ever be able to accept that.

We haven't ever really worked on potty training. We don't even know if it is a reality because she may not be able to control her bladder. But now because of these briefs and my dislike for them, that is something I really want to start working on with her this summer. There is a catch though - it's hard to hold her up there on the toilet so we would need to get an adaptive positioning seat that goes over the toilet so that she would have support while sitting up going to the bathroom.

I think if she was able to do it, she would feel like such a big girl and would be so proud of herself. And if not, I will have to accept that fact just get used to the briefs. I have hope though because I know of other kids with cp who haven't been potty trained until they were 8 years and older.

Now, about baclofen. This is something we have known for some time that is coming. Because of Faith's high tone, it has been recommended that she get a baclofen pump. This is no easy decision. It is a full-blown surgery and she would be in the hospital for more than a couple of days. Her doctors are hoping that with this pump inserted into her body, it would help decrease her tone and help her be more functional. It might make it easier for her to walk in her gait trainer and possibly make it easier for her to feed herself.

The pump itself would be inserted just under her skin near her abdomen. It would kind of be like my pacemaker except larger. The pump would then administer baclofen to her spine to help relax her muscles. It may ease her discomfort and allow her to sleep better at night.

It all sounds good but scary as well. There's the thought of getting the medicine refilled and constantly monitoring her baclofen levels. There is also not a lot of trained professionals in this area who deal with these pumps. Of course the doctors and therapists are all totally on board but it is hard when it is your own daughter. What if something goes wrong? What if she gets an infection from it? What if, what if...

We do have the opportunity to get a test dose administered so we can see how the baclofen affects her. If it seems like it would be a good thing for her, we would then set things up for her surgery. With the test dose, they would have to inject it directly into her spine and it would be good for 24 hours.

What a huge decision! We have known some kids with the pump who got theirs later in life and think it is one of the best things that have ever happened to them and wish they would have done it sooner. But we also know of parents who have had concerns after their child got the pump inserted and also know parents who hesitate for their kids to get the baclofen pump inserted.

So there you have it - two 'B' words that are weighing heavily on my mind these days. I'm thankful to have other parents to talk to and know of other children who have gone some of these same issues. I'm also thankful that I know the all-knowing Lord will help us make the right decisions.

Friday, February 18, 2011

Making Faith's Orthotics

This week Faith had two appointments at Medcenter, one of which consisted of getting her fitted for new orthotics, which by the way are also called AFOs or SMOs. The whole process took over an hour and Faith did great the whole time! She loved seeing her physical therapist again, whom she doesn't see on a regular basis anymore because she gets all of her PT at school. As the therapists worked hard to get the molding on her feet just right, they asked Faith what color of  padding she wanted, what color she wanted for her straps and if she wanted a picture on the back. Faith responded, "You can never have too many accessories!"

Jackie and another physical therapist work to get the molding just right for
Faith's long, skinny feet.
The therapists have to repeatedly fit Faith's foot in the mold, make some adjustments and fit it again. They did this several times before finally getting it perfect.
Next, it's time for Tate from MedEquip to come and do his thing which is
wrapping Faiths' leg in casting material to get the general shape of the orthotic.
Tate has to squeeze really hard to set the molding in place for Faith's foot.
It's important for Faith to be as relaxed as possible during the fitting but here
she is uncomfortable because she's fighting hard against her tone.
Finally, the last step takes place as Tate cuts away the casting. He will then take the orthotics to his shop to finish putting them together.
The final product will be an orthotic with pink and purple padding, purple straps and a picture of a yellow butterfly on the back, all which Faith picked out herself. After Tate puts them together, it is a matter of seeing how they fit and then possibly making some adjustments so that they fit her as best they can. I will be sure to post a photo of what the final product looks like.

Thursday, February 10, 2011

Life with a Congenital Heart Defect

If you have been to my blog recently then you are probably well aware that this week is Congenital Heart Defect Awareness Week. And if you read my blog you probably know that I myself have a congenital heart defect. One reason I feel the need to share this information is because there needs to be more awareness about CHD and its impact on the child and on the family.

It amazes me that even though 1 in 100 children have CHD, making it the most common birth defect, the awareness isn't as high as some other childhood health issues. It is also amazing to me that when babies are born, most hospitals do not even screen for this defect. Sometimes the baby is sent home, unknowingly having a heart defect and by the time the parent realizes something is wrong, it is too late and the baby dies. This is tragic considering that the deaths of these babies could have been prevented by running a few simple tests.

I consider myself to be very blessed in these regards because even though my heart defect (Double Outlet Right Ventricle) was not detected until I was about six months old, I still survived.

DORV is a complex condition in which the two main arteries of the heart (the pulmonary and the aorta) are both attached to the right ventricle. I think it is the aorta that was supposed be attached to my left ventricle instead of my right. So basically, I had a single functioning ventricle and due to this, I eventually became cyanotic because I wasn't receiving enough oxygen. Shortly after being diagnosed with a heart defect by a pediatric cardiologist, my parents took me to Minneapolis for my first heart surgery. I had my second surgery when I was four years old and my third when I was ten.

The surgery I had when I was ten (fontan surgery) really made me believe I was "cured." I had so much more energy and could do all kinds of activities without getting sick with migraines. I felt like I had a whole new life. And the thing was, back in the 80s, the doctors believed that these fontan surgeries were some sort of cure. They had no research to tell them otherwise since heart patients who had the fontan in the 80s were the first children to have this type of surgery.

Now, however doctors are finding out differently. As people my age have gone from childhood to adulthood, they are realizing that though their health may have improved for a while, they usually have to go through some sort of surgical revision so that their hearts can now accommodate their bigger bodies. And the scary thing is that most adults who were born with CHD do not know this and are living their lives believing they are totally cured.

As a child, even though my health improved so much, I continued to see a pediatric cardiologist at least once a year. And even as an adult, I continued to see a pediatric cardiologist even though I was not a child anymore. But these pediatric cardiologists had no experience in dealing with adults with CHD. My sophomore year before college I did go to my annual pediatric cardiology appointment and was told everything looked great. But then just one month later I began having symptoms of congestive heart failure.

 I was put on heart medication for the first in my life. I continued to have problems after that until I finally had another surgery - a revised fontan - when I was 25 years old. Three months later I had a pacemaker implanted for which I need to get a new battery for every four-five years.

Me after my last pacemaker battery change at Mayo Clinic
I know I am partially to blame for this as I was not taking very good care of myself. I was in a stage of rebellion, drinking and partying. Part of me though believed it wasn't going to affect my heart because I had been told by cardiologists that my heart was fixed and that I would not need another surgery.

Thankfully, there are those cardiologists who have recognized the need for adults with CHD to be treated differently than when they are a child. This is why many pediatric cardiologists have gone on to specialize in adults with CHD. It is now recommended that adults with CHD see only these specialized types of cardiologists instead of continuing to see their pediatric cardiologist or a regular cardiologist. And by the way, a regular cardiologist deals mainly with adults who have heart disease and have no experience whatsoever in dealing with CHD. Heart disease is not the same as a congenital heart defect.

I remember one time I ended up in the emergency room and the cardiologist on call was so excited because he had NEVER seen a person who had the fontan surgery done. It did not make me feel very confident in him!

Through living a life with a congenital heart defect, I can honestly say that I know God has had my life in His hands since the day I was born. He kept me here through all of my surgeries and all of my rebellion and even allowed me to have a beautiful and amazing daughter. I am so thankful for all He has done in my life. Medically, doctors don't really know the life expectancy of those with a single-functioning ventricle like mine. Thankfully, my trust is not in them, it is in the Lord and I know He will keep me here for as long as He needs to so that what he started in me will be complete!

If you would like to donate to the cause of CHD awareness you can click DONATE HERE. If you donate more than $10, your gift will be added by 50%. So if you donate $20 your gift will actually be $30, thanks to a generous family who has agreed to match your gift by 50%.

St Mary's Hospital at Mayo Clinic which is where I had my fourth open heart
surgery and also where Faith was in the NICU for two weeks.

Friday, February 4, 2011

A Tough Week Filled with Birthday Blessings

This has been a tough week with me and Faith both having colds and not feeling so well. Of course it doesn't help that when Faith isn't feeling well she just can't sleep. After three nights of not sleeping well, I am pretty much in zombie mode. Yesterday, we did take Faith to the walk-in clinic and she was tested for strep, which she doesn't have. The doctor didn't think it was a sinus infection so I guess we have to wait to see if she gets better.

Besides health issues, a good friend of mine lost her oldest brother (oldest of 10) in an accident. He was shoveling snow off of the roof of a barn and he ended up falling through the roof and died as a result. He is survived by his parents, his wife and seven kids, nine siblings and lots of nieces and nephews. My friend and her whole family have been heavy on my heart all week. You can read about Janee's brother and watch a touching tribute to him here.

In the midst of the tough events of the week, I feel extremely blessed to have my family and many dear friends. I also feel blessed to live to be 37 years old. This may sound strange but when I was diagnosed with such a serious heart condition, my parents were told by doctors that I probably wouldn't live to the age of 2. After I lived past 2 then it was 4. There was always this sort of death sentence hanging over my head. Thanks to the healing hand of God, along with advances in pediatric cardiology I am still here today and plan to be for many more birthdays!

A spontaneous birthday celebration following supper at Texas Road House.

My yummy birthday cake from Cold Stone. (Thanks Todd and Barbara!)
Faith looking a little sleepy as her bedtime nears
My new pink HP Netbook!