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Get Off the Internet!

Monday, May 4, 2015

The Internet is a breeding ground for fear racked mothers to feed their thoughts and curiosity.  It is place that I try not to search for information about "pulmonary hypertension" or any of the other things that we deal with daily.  I am really trying to let the doctors that treat our child do the talking and walk away from that keyboard.

At our last cardiology appointment, I asked just enough questions to get the answers I need to know and to ignite a fear that I wish I could let go of.  I learned a long time ago, that bringing home a micro preemie means a long time of specialists and care givers that give you the good, the bad and just the information that is real.  We are very aware of how fortunate we are and are very thankful.  But, I think I've been living in a state of denial for a long time.  And its time to let it go.

Bottom line, our guy is doing well.  But, he has a long way to go before we are free of all the doctors, treatments and medicine.  Its time for me to stop thinking about less frequent appointments and all the rest of it.  He just isn't ready to fly solo yet, and I have to focus on the positive and get out of the hamster wheel of false hope.

When I finally, asked about his condition, length of treatment and needs for meds, I was told unequivocally that he most definitely needs the medication that he currently takes.   It will be at least a couple years before they can start to think about weening him off of anything.   In fact, his doctor is thinking about going up on his meds, and the dreaded heart cath is back on the table.

Some days I feel like we take two steps forward and three steps back.  He gains a two pounds and looses one.  We are still trying to get him over the 30 pound mark.  No matter how much we feed him and encourage him at snacks and meals, it is just a down right struggle.

He wheezes and rattles when he breathes.   At church recently, we had to pull out his rescue inhaler during church.  This is something I really try to avoid because I hate calling attention to all of this.  When he was on oxygen children stared, adults asked what was wrong and it was scary a lot of the time.  We've come a long way, and stares and comments are really the least of it all.  But, I still don't really like it.

I want him to be a normal little boy that I'm not having to listen in on his breathing as we play out doors so that I snatch him up for a breathing treatment.  And I think that day will come.  Lots of preemies like him go on to lead very healthy lives.  There are healthy term babies that take breathing treatments and heart meds.  So, we certainly aren't alone.

Just this last weekend, his breathing scared me at the park and I had to pull him out of one of those jungle gym tunnels to listen to him rattle about then pull out his inhaler.  I hate those moments.  But, I'm also trying not dwell on them.  He went right back to playing as if nothing had happened.  And I just let him go.  He was happy, and I should be too!

In the mean time, I'm not searching online about his medications and treatments.  I don't want to know anymore than what the doctors tell me about his medical condition.  Even that frustrates me.  No two doctors he sees really agree.  Some say, "take him off his meds and see how he does".  Others say, "if he goes off his meds, he will be back on them and much sicker when he does go back on them."  See what I mean?  And those two conflicting options sometimes make me want to search online for more information.  But, I just can't.  I want to enjoy our life at home that I so desperately wanted and prayed for while we waited for it to happen.

At that very same appointment, I was shown the video from his echo so that he could talk to me about the pressures on the left side of his heart and how bad this is for anyone.  As I listen to the doctor talking to me about too much pressure on the left side can cause heart failure, my head started to swim and my mind just seemed to stop.  No, our guy isn't headed in that direction.  But, he was just nailing in that medicine is necessary to control that pressure that is bad.  Very bad.  See?  Would you want to do an Internet search about that.  And no, don't stop to do it now.  Trust me.  I have not and will not.  That conversation gave me enough to chew on mentally until the next appointment we have in July.

I've taken to asking doctors follow up questions through the medical portal they use.  I ask them to fax me information about his medicines side effects if I need it.  And I try to make informed decisions based on the whole picture that is made up of a lot of moving parts.

And after all, I trust his doctors.  They are the trained medical professionals.  No.  I don't have my head in the sand.  If I thought for one minute we needed a second opinion, I'd ask for it.  But for now, we are on an uncertain path and the Internet is a slippery slope waiting for me to fall into a downward spiral of questions leading to more questions with few answers.

So my advice to any mommies out there - Stay off the Internet.  Don't self diagnose your children and seek out the scary information that may or may not be true.  Talk to your doctors.  Ask questions and work within that dialog.  And save the internet for Pinterest, shopping and all of the other things that you could be doing that might actually benefit you in the end.

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