June 12, 2009

Coping Mechanisms

Posted in Cardiomyopathy, Hospital Life, Itty Bitty Baby News at 7:42 pm by bk2nocal

Its strange to be spending so much time in a place where emotions run so high and to see different people coping with it in such different ways.  Obviously, not all of us are in the exact same situation, but they are at least similar – children in the hospital for long periods of time and with serious conditions.  Many are far from home and some do not have any support system other than those they meet at the hospital.  My husband and I are lucky.  Although we are away from home, we have a strong support system, with many friends and family in the area.  Rare is the day we do not have someone to visit with outside of those we meet at the hospital and ourselves.  It is good to have distractions and people who are just visiting and not here continuously.  I can see where this would become all-encompassing if you did not have an escape.

I have always been one who has thought that I should let the experts do their jobs.  I know that doctors are human and they can make mistakes, but in this environment, where there are so many people working on the same case and so many checks and balances, I think that mistakes are probably relatively rare.  And I know that cardiomyopathy is pretty rare and there are not answers to every question.  I imagine that must be frustrating for the doctors as much or more than it is frustrating to me.  Today, the doctors spent four hours replacing a Central Line in M after her last one became dislodged.  Because she is so small, this is a difficult process and she went through a number of doctors attempting to do it before they finally called someone in from the cath lab to get one placed in her groin.  She has sutures in her other groin and in her neck from previous attempts and she looks like a little pin cushion or voodoo doll with all the holes.  I guess I could get upset and impatient and complain that they did a poor job, but it seems to me that they all were doing the best they could.  They felt bad and were extremely apologetic.  They looked tired after the four hours.  Their jobs are much more difficult than I could probably ever imagine and I can’t think of complaining to them about the way they do the job.  Others are not so understanding.  They may complain and demand explanations and that may make them feel better.  It makes them feel more in control of the situation.

I guess for me, I’m not supposed to be the one in control of this situation.  My daughter is sick, with a very serious illness and I don’t have the training or experience or knowledge to be in control of this situation.  Its hard to not be in control, especially when it comes to your own children…but, it has to be done.  I don’t have any choice but to relinquish control if I want what is best from a medical standpoint.  I wish I wasn’t in this situation, but I am, and I have to do what is best for her, not what makes me feel better about myself or my situation.  I consider myself to be a pretty intelligent person, but I didn’t go to med school and I didn’t get hired by Stanford to practice medicine.  All I can do is be there for her, make sure she has what she needs from a personal standpoint – blankets, toys, etc. and then let the doctors do their job and hope for the best.

So, another day in the hospital, where human behavior is at its best (a family that had a baby next to ours brought Mackenzie a gift this week – a cute little pink outfit and just dropped it off for her while we were out) and its worst (people complaining about and to doctors and nurses about things beyond their control).

I’m thankful for all of the people who choose to go into the medical profession and choose to work with children in seriously difficult situations.  It can’t be easy and I certainly could not do it myself.  I can’t imagine working with sick kids all day and being able to keep a smile on my face – but we have many nurses and doctors who do just that.  They make you feel confident and comfortable and well-cared-for.  And, that, right now, is really all I can ask for.


1 Comment »

  1. TP said,

    You have me in tears. Your strength is amazing, inspiring and proof positive that M has the best Mom in the whole world!
    Miss the 2 of you lots!

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