Skip to main content

Healthy Fear

That what all of the nurses say I have.  A Healthy Fear.

They tell me that they're glad I'm nervous because they'd be worried if I acted like all of this is no big deal.

I don't see it as a healthy fear. 

I'm TERRIFIED!

The realization that I will very soon--not really very soon, but very soon in comparison to a lifetime--be the primary caregiver for a vent-dependendent child with a tracheostomy and a gastrostomy tube hit me really hard this weekend. 

Don't get me wrong.  Matt has been wonderful.  He has done a great job of learning everything and practicing whenever he is here.  I know he'll be wonderful with Abby's care when he is home.

But we all know that his job takes him away a lot, and that leaves me. 

As the primary caregiver.

For a vent-dependent child.

With a tracheostomy and a gastrostomy tube.

Oh and not to mention being the mother of a spunky nearly four-year-old little boy!!

Like I said, terrifying.

Yes, I know most of the above statements weren't complete sentences.  I did it that way on purpose.  Call it a writer's prerogitive.

Tonight we had trach and g-tube training. We have already been checked off for g-tube care, but we needed to learn how to actually put it in (it's changed every 3 months).  That wasn't too bad.  The trach changes are another story!  We're fine with the trach tie changes, but putting the new trach in is very scary.  Let's just say I cried with fear.  Nope, we never even touched Abby! It was all done on a baby doll and I cried.  That's how scared I am about all of this!  Healthy fear.

What scares me the most is that I am directly in charge of maintaining Abby's airway.  If I mess up, she could die.  It's as simple as that.  This is why I didn't become a doctor or a nurse.  Well, that and the fact that science and I don't mix. 

However, I keep reminding myself of another time I was pretty nervous.  Back in college when I worked at a camp, I thought I might like to learn how to drive the boats.  One day of boater's training and getting the tomato-in-the-blender demonstration for what will happen if you don't watch the propeller was enough for me to say, nope!  Nevvvvvver mind!!  The director pulled me aside and convinced me to stick with it because the most cautious drivers are the best drivers.  Many, many trips out onto the river without kids later, I finally felt like I could do this....and I loved it!  That summer of [cautiously] driving kids around on the double banana boat and double tubes was awesome!

I'm not sure I'll ever be able to describe changing a trach as awesome, but I'm hoping that I will at least reach a level of comfort where I can do it without crying!

Comments

MaryJo said…
Hang in there Mama. The first time you do any of these procedures on Abby will be terrifying I'm sure. But you'll do them. And you'll do them "perfectly" BEFORE they let you take her home. All newborns pretty much rely on the skills of their mothers for their survival. Abby will require advanced skills. And you will have them!!!
Of course you are entitled to a meltdown here and there. I bet they happen less often as you hone your skills. Big Hugs, and Prayers to the 4 of you.
Sandy said…
Loving you from afar!! Feel your distress & anxiety over this-as a nurse have felt this before myself years ago--"I will be responsible or this may kill someone"--"a terrifying thought"-with much training you will be adequate as you will see. Give it time & you will be proficient-- they will not send you home to do this till you are!! Pray also-God will not give you more than you can handle & so far He has thrown a lot your way & from "your blog" sounds like you are handling just as God would have you to. He knows your needs & Loves you very much. He will help you to be familiar & proficient in all you need to know to take care of Abby. Just you wait & see. Love ya , Sandy Murphy ps. (when did you find time to send out a Thank you -but you are very welcome- hope Abby will like the little pink bear & it's song)
Jane Benitz said…
It's ok to be scared sweetie - any of us would. But remember - you have God right there with you, and He will guide you through the steps. I just know He will! You CAN do this, you are the perfect mommy for Abby and you will do whatever you need to do for her. Praying 4 u - Jane
Tara Montague said…
Julie, I hope this helps coming from someone who was exactly where you are now. You CAN handle it. You will be able to take care of Abby. You will also want to get as much support as you can from family and friends. Having someone else to rely on to pick up groceries or run to the pharmacy for you will be a godsend.

I know how scary it is to have that type of responsibility. But Mary's 13 now and still going strong! It actually becomes your "norm" fairly quickly and just all becomes routine. The trach changes have always been pretty easy with no real issues. I feel like everyone made a bigger deal out of them than they really are. I'm actual still more nervous about doing a g-tube change than a trach change - the g-tube is harder to insert than the trach. At this point, I have changed Mary's trach in bed, her wheelchair, in the car, even at the store. You learn to travel with everything you need. We have the exact same type of vent (I saw it in the pictures) and it's really portable.

As her mom, you will know what Abby needs. Trust your gut and don't be afraid to disagree with doctors or other professionals. You will know Abby and her care and her needs better than they ever could. Even non-verbal, she will learn to communicate with you and you'll be able to figure out what she needs.

Use as many resources as you can find, don't be afraid to ask for help when you need it. I recommend a parent support group - I never wanted to go to them, but once I finally did, I thought it helped tremendously.

You will be able to handle it all, simply because you love Abby enough to want to. Have faith in yourself.

Popular posts from this blog

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)   Notice that it's not to get famous and it never wi

The Potty Man

Caleb LOVES to go potty! I have never heard a potty training story like this one....Caleb tells us when he needs to go, we take his diaper off, and he goes! Now, is it perfect? No, not at all! We aren't trying to potty train at at all, but we figure every time he goes is one less diaper we have to change! The only time we consistantly put him on the potty is when we give him a bath (he always pees in the tub, so we know he needs to go!) He almost always goes on the potty now instead of the tub though. When he's not "really" going potty, he's pretending to go potty! He's such a funny kid!

Lego Party: Favors

I'm a little slow in posting the Lego Party pictures, but I think I have a few excuses I could use.  At any rate, I wanted to share what I did for the party!  It will take a few posts, so stay with me.  I'll start with how I did the favors. These are the goody bags I made.  I just bought solid colored gift bags and matched scrapbook paper to each bag.  Then I punched circles and attached them with the 3D foam tape so that the circles were raised. I used the keychain (explained below) as a name tag on the outside. These are Duplo blocks.  I put a round magnet on the back and...voila!  A magnet!  (note:  hot glue doesn't work so well...I ended up reglueing them with my apoxy because the magnets fell off.) I made crayons using Lego man crayons.  Yes, I know this guy has lost half of his leg.  The others were already packaged and I didn't want to open one up just to get a picture.  I used a Lego mold  to make the crayons.  Caleb put small pieces of crayon in each m