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!


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