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 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!

August 21, 2009

The Bittersweet Reality of Transplants

Posted in Uncategorized at 6:50 pm by bk2nocal

Receiving a transplant is bittersweet in many ways.  First, the fact that one needs a transplant is bad, but the fact that they could actually find an organ compatible is good.  Second, the fact that one now has a functioning organ is good, but the fact that one will have to be on immunosuppressants, with all of their side effects, for the rest of one’s life is bad.  Third, the relief as a parent of a child receiving a transplant is huge, but the constant worry that follows it is also huge.  I am lucky in that I am typically a pretty optimistic person who does not want to worry about things that may not happen until they happen.  But, in this situation, I find myself constantly in a state of underlying worry and stress.  I am happy that M’s rejection level went from a 3 to a 2 in the last two weeks, but I am also worried that the number was not a 1 or 0 as the transplant coordinators seemed to want.  I am also worried that M is now having to have twice as many biopsies as they original had her scheduled to have (she has another in two weeks).  I am also worried everytime I think about all of the side effects of the medicines she is required to take.  I find my stress level going through the roof everytime she has spits up more than a very slight amount (the digestive system is usually one of the first signs of heart failure in infants).  It all weighs heavily on me, even if I don’t regularly “think” about it directly.   I just want her to be well again, and really she is right now.  She is doing great.  But, I don’t want this rejection to get in the way of that.  I can only make sure she gets her medicines that she is supposed to get and hope that they do the job they are designed to do and do not cause her any more health problems. I am so thankful that she has received a new heart that, by all medical tests and appearances, seems to be functioning well.  But, that thankfulness is always tempered by these other worries – hence, the bittersweet reality of transplants.

On a positive note, research is moving forward constantly in the area of transplants.  I am hopeful that some of this research can have a positive impact on M’s life – give her (and me) some relief from her lifelong pursuit of balancing rejection against maintaining her basic health.  On that front, research being done right here at Lucille Packard Children’s Hospital is attempting to identify gene markers for those likely to be able to tolerate transplants without immunosuppressants and those who have a necessity for the immunosuppressants.  For me, the most exciting prospect is this:

“The real value of this technology is the ability to easily and repeatedly monitor patients over long periods of time,” said Sarwal. “We can keep an eye on this genetic signature and watch for changes that might indicate the beginning of rejection before any clinical signs are apparent. This could be a very exciting advance for both patients and physicians as it can lead to the ability to, for the first time, safely customize immunosuppression for an individual patient.”

Right now, the immunosuppressant levels seem like such a guessing game for the doctors that this idea of being able to customize for the individual patient seems huge.  You can read more about this research here.

August 17, 2009

“Profitability Gap” Means Adult Treatment for Children

Posted in Uncategorized at 10:22 pm by bk2nocal

Patti, a member of the Children’s Cardiomyopathy Foundation email listserv I am a member of, posted the WSJ article, “Little Hearts, Big Problems,” that speaks to the reason why, despite congenital heart defects being the number one birth defect in America, there are few treatments designed specifically for children.  The “profitability gap” was something that our social worker at LPCH spoke to us about the Berlin Heart (manufactured in Germany and only available in the US under a “compassionate” clause from the FDA).  I posted on here a little while back about a new alternative to the Berlin Heart that just received NIH funding for research, but these are few and far between.  We also experienced the problems with medications discussed in the WSJ article.  When M first went home, she was on a liquid form of Enalipril that the hospital pharmacy had provided to us on discharge.  When we ran out a couple of weeks later, there was not one pharmacy in our home town that would/could provide it in liquid form.  So, we had to go to our apothecary (yes, there still are apothecaries around) in order to have it made!

I am becoming more and more aware of the importance of raising the profile of pediatric heart problems.  This article just goes to prove that more needs to be done.

New Resource for Parents of Children with Heart Defects

Posted in Uncategorized at 3:06 pm by bk2nocal

I came across this report on and thought some of you readers out there may be interested in reading the original article and getting the book it discusses, It’s My Heart from The Children’s Heart Foundation.  Although M’s heart problems do not seem to be congenital (they are not absolutely sure as her first X-ray in the NICU was “inconclusive” as to whether her heart was already large and my ultrasounds did not seem to show any abnormalities) and the structure of her original heart was absolutely normal, a large number of people I have met here at the Ronald McDonald house and Lucille Packard have children with structural heart defects.  Prior to our experience here at LPCH, I had no idea at all how high the numbers of heart defects were in babies.  During my prenatal visits to the doctors and my ultrasound consultations, we discussed physical and developmental problems that may arise in our baby – Down’s Syndrome since I was older, Spina Bifida, etc., but I do not recollect ever reading or hearing about the possibility of heart defects.  But, the ABC article says that congenital heart defects are the number one birth defect in America.

The Its My Heart booklet comes in both English and Spanish and Cardiomyopathy, which M suffers – or do I say suffered now since she has a new heart? – is included in Chapter Three, “Acquired Heart Conditions”.  After reading the description of signs of heart failure in infants, I realize that it may be difficult to detect some of these in preemies, as they are considered somewhat “normal”.  For example, what I read about preemies indicated that since they had small noses they would tend to “grunt” a bit, especially when feeding.  In addition, preemies tend to have higher heart rates than full term babies.  And, in our case, the X-ray that was taken in the NICU showed a “slightly enlarged heart” but that can be caused by the baby taking a big breath right before they shoot the X-ray, which causes a distortion from the lungs pressing the heart up toward the X-ray machine.  So, she may have been born with it, but she may not have been born with it.

I think the booklet is a great resource for those who have just found out their child has a congenital heart defects.  It will help them communicate effectively with their doctors and nurses, feel more comfortable with the treatments their child receives and just generally understand what is happening with their child’s health.  I hope that some of you might find it helpful!

June 22, 2009


Posted in Uncategorized at 3:03 pm by bk2nocal

I was reading the blog of another family who had a child in the PICU with Mackenzie and came across a post on courage that I feel can not be restated with any improvement.  So, I’m providing a link to it below.  Just a bit of background on this family and their connection to us:

When Mackenzie first went into the hospital back in April, she was next door to a little girl whose room was covered in pictures and art projects and happy objects.  I used to walk by that door and hear music coming from it and see all the visual happiness and it would make me feel a little better about being there.  When Mackenzie came back to the hospital early this month, she was placed in a room with two other children and one of them was the girl from the visually happy room!  She was now not in a private room, so there was not the volume of objects, but her bed still had pictures and art projects on it.  On the second day, her sisters and brothers were standing bedside singing Twinkle, Twinkle Little Star to her and it made me smile.  Over the coming days, her brothers and sisters would come to visit – always happy and smiling and taking pictures and singing – it was truly a happy distraction to have…when I saw their mom in the lobby one day I told her that I appreciated her kids being so well-behaved and always so happy and that it was nice to see healthy, happy kids in the PICU every once in while.  She thanked me and we began greeting each other in passing.  Soon after, Mackenzie was moved into a private room and her second day there, we got a gift from “Charity’s Family”…the mom and her kids had dropped off a hand-wrapped cute little outfit for Mackenzie…I was truly touched.

I went to thank them and met the grandmother – an incredibly nice woman.  Charity has since moved on to home and I hope she is doing well and will continue to thrive.  The following is a blog post that Charity’s mom wrote while Charity was still in the hospital and it truly captures the understanding that you begin to gain when you have a child in the PICU…things sometimes seem bad, but we are LUCKY that Mackenzie has something that can be treated and that she will most likely recover from and go on to live a happy and healthy life.  So many others are not so “lucky” as us…and yet they go on each day hoping for the best and giving their children what they can.  I can’t say it better, so I encourage you to read “Courage…”

June 8, 2009

Life Upended…

Posted in Uncategorized at 10:56 am by bk2nocal

As of now, M is going to be listed for a heart transplant the middle-to-end of this week.  As if this news is not enough of an upheaval, we have also realized that we will need to move in order to be within the 2-3 hour radius of the hospital in case she gets to go home in the meantime.  Hearts only last four to five hours after being removed from the donor, so M has to be able to get here to the hospital within three hours of them hearing there is a heart coming available.  So, we are going to give notice on our place (that we love) in Chico and I’m going to be temporarily moving in with my sister in Davis.  This will save us money on rent for the next month or so, when my husband will be gone working in Michigan (he works five weeks at a debate camp there) and I will most likely be staying mostly at the Ronald McDonald house while M recovers from her latest hospitalization.  We’ll put our stuff in storage and move only necessities, then reevaluatel where we are at the end of July – maybe we’ll leave our stuff in storage, maybe we’ll find a place in the Davis/Woodland area to move to. 

I really hate moving.  And it makes all the worse that we are moving from a place we really like a lot, but it has to be done.  This whole thing has really upended our lives.  Its difficult to figure out what to prioritize, where to find stability and how to plan for the future when you don’t really know what it holds.  But, I suppose that we will adapt and we will learn more and be able to plan better once we get used to this new state of being.

We are currently waiting for the doctors to round so we can hear where M stands this morning.  Will she be extubated?  Is her infection gone?  Can she be listed on the transplant list now?  Can she start getting her weaned off milirinone and back on her oral meds?  Will she be able to bottle feed again or will we have to deal with an NG tube for the time being?  Are her lungs working okay?  If she gets extubated, will she be able to stay extubated?

One of the other families who has a three-year-old in here in the hospital left a gift of a cute little pink, organic outfit for her yesterday.  So sweet and such a kind thing to do.  I need to go get a thank-you card for them…and maybe a picture frame because they love taking pictures. 

I’m not sure what life will be like here for five weeks while my husband is gone to Michigan.  I’m sure I will have lots of friends and family willing to come and visit me and the baby, but it will definitely be different. 

So much to think about…so much unknown.

June 6, 2009


Posted in Cardiomyopathy, Transplantation, Uncategorized at 2:54 pm by bk2nocal

brokenheartThe last post here was April 7.  Closely following that date, M was put in the hospital for RSV, which is a respiratory virus.  She was in our local hospital for four and a half days with respiratory distress, getting breathing treatments and on oxygen, before being flown to a bigger Children’s hospital to be put on a ventilator to give her some breathing relief.  When she arrived there and they looked at her x-rays, they noticed a very enlarged heart – five times the normal size!  Being new to this whole mom thing, I had no idea what this meant.  It was diagnosed as cardiomyopathy.  After EKGs and an Echocardiogram, she was found to have an extremely low-functioning left ventricle.  She also still had a respiratory problem, so she remained on a ventilator and was put on milirinone and heparin for her heart.  After one week there, she had a heart catherization to check the structure of her heart, which was found to be fine.  After that, they decided with the low functioning of her heart, she should be in a place where they would be better able to handle her heart failing, so she was shipped to Lucille Packard Children’s Hospital (LPCH) at Stanford.  We were informed that a heart transplant could be in her future, but that they would do everything they could to treat her by other means.  She was still being treated for her respiratory problems as well.  She spent three weeks in LPCH, two weeks with a ventilator and one week without.  She was weaned off the milirinone, which is an IV-only drug, and started on Enalapril and Carvedilol, which do similar things to milirinone but can be given orally.  It isn’t easy to give a three month old anything orally, but its a lot easier than having her on an IV!  In addition to those two drugs, she was also on Lasix to keep fluids from building up in her system and causing pulmonary edema, among other things.  In addition, she was on procrit or epogen to build up her red blood cells.   After almost a week in the hospital, getting her back on the bottle and learning how to give her shots of procrit and put in an NG tube if necessary (all of which my husband did because I was sick with some kind of bronchial infection), we were able to take her to the Ronald McDonald House with us.  After three days there, we were able to take her home with us. 

Life was definitely different.  We had a tight schedule for feedings and medicines…she was on the three heart medicines – enalapril, carvedilol and lasix twice a day, the procrit shots once every other day, a multivitamin once a day, iron three times a day and aspirin once a day, which we had to grind up and put in water to give to her.  It was all a little overwhelming to be sure.  We were home with her for two weeks and came back to Stanford for a check-up and she seemed to be doing well.  They took her off the procrit and iron and sent us on our way.  We decided to go to my in-laws for a visit before a return appointment to Stanford for a genetics appointment the following Tuesday, since their house was about the same distance as our house from Stanford.  She seemed to be doing okay, although she didn’t like the long car ride very much.  She had gained weight at the genetics appointment and although she had a touch of diahrrea, all seemed pretty well.  We headed home with her.

We were home for another week, during which the diahrrea continued and she became extremely fussy each time she was going to have a bowel movement.  She would scream, fight us, scratch, turn very red, etc.  Sometimes for more than an hour.  It was extremely difficult to deal with, but everyone – our pediatrician at home, the cardiologist on-call at Stanford, friends and family, just kept saying it was some kind of GI condition and we would just have to wait it out and deal with it.  I posted on the Children’s Cardiomyopathy Foundation’s  (CCF) listserv and asked about it and a number of people wrote back saying they had experienced the same thing with their babies.  Finally, she seemed to improve for one day, although she was now having bowel movements every feeding, sometimes twice, whereas before she was having one or two a day at most.  That last night she was really “pulling”  or retracting at the chest and around her lungs and she was looking really pale, so we called the cardiologist on-call at Stanford again and she advised us to take her into the ER. 

So, last Sunday night at 11 p.m., we took her to our local ER where they attempted to stabilize her and were advised to ship her back to LPCH.  She was flown out at 5 a.m. on Monday morning and intubated as soon as she arrived.  She has been on the ventilator since.  She now has tested positive for an infection of some sort.  The pre-transplant team came and spoke to us yesterday, and they have advised us to list her on the transplant list ASAP once her infection is over.  So, we are looking at the middle or end of next week.

In the meantime, we MAY be able to take her home, but we are going to have to move in order to be within the requisite two to three hours of Stanford in case a heart comes in.  At this point, there is so much to think about – moving, coordinating work with hospital stays, being in Stanford for months afterwards if she were to get a transplant that I can’t even really sort it all out.  We are currently staying at the Ronald McDonald House again.  It is a lifesaver to be sure.  Although we have friends and family in the area that would be happy to house us, but its just easier to be close to the hospital and not have to worry about being an inconvenience to others…there is enough to worry about without having to worry about that.

So, our experience with transplant starts now.  I am amazed when I see the kids who have had transplants and how well they are doing.  The statistics for success are pretty high nowadays.  Its a difficult thing to deal with, but at least it can be dealt with.  So, this blog is taking a slightly different focus and I am hoping that it can help others who may be in similar situations in the future and help our friends understand what we’re going through.  I have another blog at Carepages under Macpeterson that logs our experience so far in more detail. 

I am including links to as many things as I can think of that other people may want to read about and understand.  Cardiomyopathy is a pretty rare thing – according to the CCF, 12 children out of every MILLION are diagnosed with cardiomyopathy.  So, M has a pretty rare disease.  But, she is in very good hands.  The LPCH does a number of heart transplants on children every year.  So, if we have to have something done to her, she is in the best possible place for it. 

This has been a pretty lengthy post.  I could probably go on forever, but I won’t.  I am sure I will have plenty of future posts to share information and more of our experience!

April 6, 2009

Another Week of Weight Gain!

Posted in Uncategorized at 8:26 pm by bk2nocal

M is up to five pounds, seven ounces.  Not quite five and a half pounds, but close.  I have been a grumpy Gus for the last day or so.  I am having my first post-pregnancy period and on top of everything else, I think it drove me over the edge.  I had a little breakdown last night thinking of everything I had to do and how exhausted I already was, so when I got up at 5 a.m. to do M’s feeding, I stayed up and started a load of laundry, put the dishes away from the dishwasher, loaded the dishwasher, sterilized bottles, and got through some email.  That made me feel a bit better.  We then had to go to M’s Dr. appointment.  Still not producing enough milk, but they said that it may take up to two weeks to fully get the effect of the drug they have me taking.  I am hoping it happens soon…and I’m hoping M starts to breastfeed soon so I won’t have to pump so often.  Once again, I am trying to motivate myself to be more serious about getting the breastfeeding to work.