Jarom's CDH SUCCESS Story...

The Things I Wish Someone Told Me

Ventilators - There are varying levels of ventilators.  Jarom was intibated where the machine breathed for him.  Once his surgeries were done and he grew stronger, he graduated to a different method where the ventilator 'assisted' his breathing.  It would sense he was taking a breath and provide positive pressure like a turbo on a car.  If the baby doesn't get stronger, the lungs begin to get tired and go plastic/rigid.  At this point a higher frequency ventilator is used that provides rapid forced breaths.  If things continue to worsen, ECMO can be used.  This method takes the blood from the main vessels in the neck through a machine to oxygenate it.  


Oxygen levels - It's all about Oxygen levels.  There will be a monitor showing Carbon Dioxide levels.  I watched it like a hawk.  Over time, the breathing tube would fill with fluid.  I could tell when it would be time to clean this tube out.  It basically amounts to making him hold his breath while they clean it.  They convulse if they aren't still paralyzed with drugs.  The nurses will tell you to watch the baby and not the monitors.  Not a good thing to tell an engineer.  I could tell when he was going to start to gasp for air.  It was one of these occasions that I buckled when Jarom started to fight it.  That was the last time I came regularly to the NICU.  Bottom line, stay calm, be attentive, show concern to the staff but let them do their job.  


Resources - Up until this time in my life I wanted to be self-sufficient.  Pride was certainly one of my bigger sins.  If you are dealing with CDH, you are going to need EVERYONE.  Relatives, friends, neighbors, colleagues at work, heath care professionals, other people going through the same thing at the hospital and even strangers.  I have printed all of the emails from that time period and it is 1 full ream of paper.  They only cover from June 15th to July 27th.  The time period from just before discovery to when we left for UCSF for Fetal Surgery.


Better Service for Your Child - The staff are people doing a job.  They are wonderful people!  They are still people though.  If you are interested, they will be too.  If you are at the bed side, the staff will do a better job for your child.  Carrie would be there all hours of visitation and would call every night sometimes 3 or 4 times to check him with the mid shift nurse.  We recorded our voices on small tape recorders and put them in his bed at night.  He was touched, talked too and sang to.  In our case, I became everything else.  I handled caring for the other two boys, food, cleaning the room and Carrie was full time mother to Jarom.  Figure out your strengths and work to them.


Schools are for learning - Makes sense but I let myself get upset when inexperienced people were involved with my son.  Be patient.  If you are involved, things will be taken care of.  Never forget you are the parent though.  If they want to do a test and you feel it is not in the best interest of your child.  Say NO!  At one point after getting off of the ventilator, they wanted to reintibate Jarom so they could get some data.  We said no.  They asked to do an MRI.   We agreed but when the procedure started, they did more than they eluded to.  Carrie let them know that we would not put up with deception.  Do what is best for your child.  This is their job.  They are somewhat numb to the human factor.  (Not all though, we had some awesome people!)


Money - Let the hospital bills work them selves out.  Easier said than done but Jarom was expensive and somehow it worked out.  To keep your life from imploding, don't delay and look at advanced sick leave, advanced annual leave, leave donor programs at work, trials for CDH studies, contact creditors, contact the local Ronald McDonald house, hospital social services and whatever else you need to do.  Don't delay!!!   This process becomes your job.


Lung to Head Ratio (LHR) - This number drives severity of condition.  It dictates what options to pursue.  Jarom was .95.