Lost in a Nightmare

You know that moment when you are asleep and trapped in a nightmare, your subconscious screams for you to wake up, but no matter how hard you try, you can’t get out?  That’s our life right now.

Gabriel had his surgery a week ago Tuesday.  We are eight days post-op and nothing seems to be getting any better.

Let’s start with the surgery.  For all intents and purposes, the surgery was successful.  The plastic surgeon was able to close the palate, repair the lips, and even close up the side of the gums left open from the last surgery.  All of this took a total of eight, very long, hours, when first estimated to only be four and a half.

Over 150 stitches later, Gabriel came out of surgery looking for his mom.  I sat with him in recovery for an hour and a half before being moved to his room for the night.

That proved to be the longest night of my life.

We thought things weren’t going to be so bad because Gabriel ate eight ounces of formula and two jars of baby food; all through a huge syringe with a long rubber tube on the end.  Then things went downhill.

He started to run a fever, stopped eating, and every time he cried, his stats would drop and the nurse would run in.  They never had to put oxygen on him, but with alarms going off constantly, all I did was hold him in a very uncomfortable rocking chair and cry the entire night.

Despite still running a fever on Wednesday, we got to bring him home.  He was very happy to be home and was actually starting to try to smile – through a very swollen face.  Unfortunately, he was still not trying to eat.

Thursday morning, the fever was over 101, so we called the plastic surgeon and he told us to bring him down.  The surgeon said everything looked good and it was too soon for an infection, but there is the risk of pneumonia since we was under anesthesia for so long.  He called us in an antibiotic, approved a higher dosage of pain medication, and sent us on our way.

Now nearly a week later, he still won’t eat.  Yesterday, I literally held him down and forced about eight ounces of formula into him over the course of the entire day.  Chad managed to get another four ounces in him, so in total, he drank twelve ounces – not very much.

We took him to his pediatrician yesterday to discuss the fevers and the fact that he keeps pulling on his ears.  She said that his lungs sound good and his ears are clear, but if the fevers continue to be over 101, we have to call tomorrow so she can order a chest x-ray to definitively rule out pneumonia.

The other potentially rotten news is that he had his follow-up with the plastic surgeon on Monday who said that while two parts of the palate are holding well, there is one part that wraps around the sides, that is not adhering itself like it’s supposed to.  He told us he is not ready to rush him back into surgery, as this part should attach itself on its own.  The problem is, whenever Gabriel cries, you can see the entire palate bounce up and down like it’s a big trampoline.   We asked what we can do to help or what we should watch for.   

He told us to keep his nose clean (which I caused him to bleed when cleaning it out) and to keep him from crying.  Yeah.  Keep a baby who is running high fevers, is in a tremendous amount of pain, is severely gassy and constipated, and is virtually starving, from crying.  So far, we have failed dramatically at this task.

I don’t know what to do anymore.  I keep asking God to help him heal, but I’m just not sure he’s listening.  So much for finally getting to know what ‘normal’ is like.

I realize this post is a very brief description of what is going on, but since Gabriel only sleeps for about two hours at a time, I know he’s going to wake soon and I wanted to get something out to all of you.

Your thoughts and prayers have been very much appreciated and I ask that you continue those until such a time when we know our Gabriel is going to be safe and sound.

 
Oh, and enjoy the pics below…

Hospital Arrival - Goodbye Wide Smiles

All Dressed Up and Ready To Go

Recovering on Daddy - PS Gave Me Whiskers

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Playing With Daddy's Phone

Finally Home - Trying to Smile

No More Whiskers

G Money Chillin' at Home

 

Because Life Can Never Just Be Boring…

 I know this may shock you, but this post is actually not about Gabriel this time – it’s about Ethan.

Last Monday, Ethan was diagnosed as having ‘pretty severe’ ADHD (Attention Deficit Hyperactivity Disorder).  You’re probably wondering how we got to this diagnosis, so let me back up and share a little tale with you.

When Ethan turned about 2½, he developed a tremendous fear of balloons.  He used to say it was because his cousin popped a balloon in his face, but we have never been able to find evidence of that actually happening.  Since then, we have not had any balloons at birthday parties, and if we go to a birthday party where there are balloons, we pretty much have to leave due to him having a full-blown meltdown – think hysterics.  It doesn’t matter the kind of balloon, be it helium or just normal oxygen filled – it’s all balloons.

This fear of balloons morphed into a fear of other things – bounce houses, chewing gum, rubber bands – anything that could pop unexpectedly.

He also developed a fear of having water on his face or head, which makes bathtime a real treat.

Then there was automatic flushing toilets and fireworks – not the big fireworks, he loves those, but the ones you shoot off in your backyard.

We had tried a million different ways to help him with these fears.  We used to have him stand in his bedroom, looking out the window, while Chad blew up a balloon.  When that worked, we would stand in the kitchen and watch through the window there.  That seemed okay, but as soon as we opened the door to try again, hysterics.

We had him watch his cousins bounce around and have fun in bounce houses, but he never wanted to join and eventually wouldn’t even go within twenty feet of one without going into hysterics.

In addition to irrational fears, Ethan developed an obsession for strange things.  He knows everything there is to know about fire alarms – he can tell you what kind it is and what kind of sound it makes.  He even wants Santa to bring him a BG12 Fire Pull Station for Christmas.  He also can’t stop talking about elevators, escalators, and tornadoes.

Since he started kindergarten this year, it became evident that we were finally going to have to address the fears because they didn’t seem to be going away on their own.  We couldn’t expect that if he was invited to a birthday party that the parents would outlaw balloons and bounce houses.

So, we took him to his pediatrician for his kindergarten physical and asked her opinion about these things.  We wanted to know 1) is this ‘normal’ and 2) should we feed these fears and obsessions or ignore them.

Her advice was to contact a child psychologist.  She wasn’t concerned about the obsessions because, while he chose strange things, it is not unusual for a six or seven year old to become engrossed in something so much they can’t not talk about it.  However, she was concerned with the irrational fears.

We started taking him to a child psychologist about two months ago.  After a couple of sessions, she brought me into her office and said that she thinks he has some serious anxiety issues, but can’t fully diagnose him because she can’t get him to focus, sit still, and stop talking long enough to answer her questions.

A light bulb went off in my head at that moment.  I explained to her that he has always been like that – always on the go, never slowing down.

The thing is, I didn’t bring it up because I really didn’t think there was anything bizarre about it.  I have never been around little boys – I had a sister and two close female cousins growing up, so I just chalked it up to normal boy behavior. 

But then, all these things started rushing towards me – like the fact that he can only sit still through the opening credits of a movie before he has to get up, or the fact that he constantly interrupts us to talk despite our best efforts to teach him manners, or the fact that his preschool teacher pointed out that he seems to struggle with focusing.  The list goes on and on, really.

I asked the psychologist if she was thinking ADHD, and she said she wasn’t ready to say that definitively.  It could be that he just needed a little extra time to mature, but she wanted to do some tests to find out.  She gave us, and Ethan’s teacher, a questionnaire to complete and spent the next couple weeks conducting her test.

Now, there are three main branches to ADHD.  The first is impulsivity, of which he is within the normal guidelines for a six year old.  The other two are lack of focus and hyperactivity, of which Ethan is a textbook case.

I can tell you that I wasn’t surprised by her diagnosis, but I was saddened by it.  Two weeks out (at the time) from Gabriel’s third surgery, the last thing I wanted to hear was that there was something ‘wrong’ with my other child.

As we drove home that night, I was reading about the causes of ADHD.  The first is that it is genetics.  We have no evidence of anyone in either of our families ever being diagnosed with ADHD, so this one seemed to rule itself out.  The second is brain chemistry.  This is the most likely culprit as my family has a long history of chemical imbalances which usually show themselves as extreme anxiety.  The last is environment – problems or things that happen before a baby is born.  Huh.  Well, that’s something I am all too familiar with, given that cleft happens in the first five to eight weeks of womb time (enter mother’s guilt here).

I know what you’re thinking – ‘it’s not your fault, stop blaming yourself, it could always be worse’ – all of which are true, especially the fact that it could always be worse.  For this I feel incredibly guilty and while I completely understand the others, it does not stop my momentary need for a little, private pity party.

No worries though, I will give myself a swift kick in the ass soon and move on.

So, what’s next? 

The psychologist will continue to see Ethan to try and help with his fears.  On the 23^rd of October, he has an appointment with a psychiatrist to discuss if, when, and what kind of medication he might need.

In the meantime, I am reading my ADHD books, creating a reward board, and trying to help Ethan establish a routine.  I am also altering my own behavior to better deal with his.  It’s funny how realizing something is beyond someone’s control makes you change the way you react to them.

And no, before you ask, my blog is not morphing into an ADHD blog; I just thought you should know what’s going on in addition to Gabriel’s journey with cleft.

Surgery for Gabriel is a week from tomorrow.  I’m not sleeping anymore.  Good thing I am writing a romance novel.  It provides a great escape and gives me things to do at four o’clock in the morning.

Until next time…