Wednesday, December 12, 2012

Riley Kid

Today, somebody told me, "I had no idea she was a Riley kid," and it made me realize that enough people do not know Mischief's story.  So, here is my attempt to shed some advise to other mothers who are dealing with something that is quite common (even though it usually isn't as severe as Mischief's condition was), but most people know little about it.

Let me start off by saying that Mischief had a lot of tests, exams, doctors' visits, etc at Riley, but she never was admitted or anything like that, because (being a nurse) I was able to care for her at home.  So, we never had to stay in the hospital more than a day for tests, or anything along those lines - Thank you, God, for that blessing.

Now, let's start at the beginning.  When Mischief was born, she had a lot of problems gaining weight, etc because she threw up a lot.  I don't know that I can stress what a lot means.  Take a 10oz bottle, waive it around in the air, spilling it everywhere, and that is what she did by throwing up 8-12 times a day.  For the first four weeks of her life, she gained exactly no weight at all.  I was trying to nurse, but she threw that up, so I had to supplement with bottles.  I only nursed two months, because it became more of a pain than it was worth.  For the first year of her life, she literally (and I am not kidding you) threw up on three to four loads of laundry a day.  Most people (doctors' included) thought I was exaggerating, and she was a FTT (failure to thrive) baby.  Even her father, who worked full time, had no full extent of the problem, until he was left alone with her, and was quite scared to be left alone with her for a long time, after the first time.

Now, on from the annoying part to the scary part,  When a child is born and developing, obviously, they cannot hold themselves up.  This meant for us, basically, when Mischief threw up, she choked.  She had fluids running out her nose and her mouth, she would panic, and try to breath while projectile vomiting, and she would choke.  At least once a day, she had to have the baby Heimlich, which may not seem like a big deal, until it is your child who is turning blue and cannot breath even enough to cry.  They simply have their eyes wide open, and lips turning blue.  It's the most terrifying, horrifying experience, besides giving your baby CPR.  I only had to do actual rescue breaths for her a couple times, but the Heimlich had to be done daily.  I had to sleep with her, sitting on the couch, holding her all night long. She didn't dare be laid down, or left alone at all, for she would choke.

One doctor, asked me one time, "if it's so bad at home, why is she never in the ER?"  This question actually offended me, because, if I didn't treat her at home, and let her go breathless until the ambulance got there, she would have been brain dead, or worse.  I did what I had to do to keep her alive.

Now, we did all the usual treatments of rice in the bottle, but that gave her problems with constipation, so she had to have apple juice and prune juice daily.  I don't know the rice did any good, as it just made the stuff she was throwing up thicker.  They told me not to feed her after she threw up, but then I had an angry child who was hungry, so I fed her.  Otherwise, she simply got more angry about being hungry, and would get herself so worked up she would start retching.

When she was old enough to eat solid foods (and I started them at 3 months), she refused to eat.  Therefore, I took a large dosing syringe for infant medicines, and held her arms down and her head back, and I had to force food in her mouth.  Most of this she threw up, so we just kept feeding, until she was able to keep enough down she was satisfied.  It took over an hour to feed her a single meal.  It grossed me out at the time, but every time she threw up, the dog was there to clean the carpet!  At first, I scolded him and told him to not, but then, I realized that he was saving the carpet, and it was all fresh food, so I just looked the other way.

One day, I was so frustrated with her and the situation we were in, I was talking to a mother of one of several of my 4-H kids, and she was telling me about the experiences with her own kids.  She gave me the best advice anyone ever did:  Just keep her alive.  Do what you have to do to keep her alive.  Be ruthless and selfless, and keep her alive.  The rest will work itself out.  I have since passed this advice onto other young mothers that I know, because it made so much sense to me, and nobody had ever said anything so plain and simple to me before.

A picture of the serious scientist these days, to break up the wordiness of the post!

We were at Riley several times for day long visits for evaluations, tests, and appointments.  We had several observation sessions, where the medical professionals simply watched her take a bottle or food and throw it up.  When she had a barium study done, they laid her on her back to do the study, and she immediately threw it up, and choked on the strawberry flavored barium formula they had fed her.  All anyone ever found in the studies was REFLUX.  Simply, GERD, nothing more.  We were going through all of this, for a simple and extremely common condition.  I was floored there was nothing more to the condition.  There was nothing structurally wrong, no pyloric stenosis, etc, simply GERD.

During our doctors' visits and tests, she developed a fear of people and closed rooms, so I could not go to the bathroom with her in the room, because she was scared of small closed rooms.  During one trip to Riley, the GI doctor decided that I was keeping her alive, she was gaining weight, and she was developing correctly, so he was going to do nothing to treat the GERD, when other doctors were talking about surgeries, etc.  His main reason for waiting to treat it, was that she was terrified of people.  She would immediately start screaming and was get so upset, they could not even do an exam on her.  The only thing that ever calmed her down, was leaving the office.  He decided a surgery and hospital stay was more at risk of damaging her psychologically than the GERD was of damaging her physically, as long as I could handle her at home.

So, that's what I did.  I handled her at home.  It was a long road, and she wasn't considered medically clear until she was four years old.  She still tells me about how she spits up in her mouth, or variations of the same thing, so our journey is not over, but it is not hurting her yet, so we are playing a waiting game.  Eventually, it will start causing more damage than her body can repair, and we will have to have surgery, but I am holding out hope that this will not be until she is an adult.

Mischief is a beautiful, intelligent, growing girl who loves life and everything in it.  She does everything with gusto, loves school, and loves to learn.  She does not remember most of what went on the first two years of her life, and I am thankful for that.  The only thing I wish was that somebody had been there for me, to share their experience of a similar condition with me.  So, here it is,  Here is the support, and the story that I wished I could of had when I was going through this.  I hope this post finds somebody out there who is going through this common condition, and tells you:  There is light at the end of the tunnel!  Hang in there, and do your best.  Keep doing your laundry, use blankets as burp cloths, and keep them alive and happy.


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