I try not to use the word "hate" very often, finding it rare that I need to be so strong and decisive in my opinion. It's like using the "F" word. I only REALLY need it when I accidentally kick something barefoot or drop something heavy on my pinky toe.
But I HATE Austin's suction machine - the obnoxious lawn mower roar, the slimy mess dripping from the Yankauer, the cleaning of the swirling thick secretions from the canister....
Ugh. Yuck. Dry heave.
*****
I don't remember much from the first 24 hours after Austin was born. During birth, "somehow" I dislocated my pelvis (basically my pubic symphysis snapped apart like a wishbone requiring immediate surgery, an external fixator screwed into my pelvis, and morphine at the touch of a button...a story for another day). But there was a point when I was lucid and lying in my hospital bed when my husband and I looked at one another and mouthed, "Are they going to feed him?!"
Upon my husband's vocalizing this question to the nurse and after the nurse's look of surprise, bewilderment and the comment, "Oh, you want to feed him?! (I know, how dare parents of a medically complex Dandy Walker baby with an iffy prognosis want to feed their child!), a NICU team arrived, shoved a thin rubbery, orange tube up the baby's nose, down his throat, into his stomach, and then through this apparatus bolused a few milliliters of formula. I was told it was an NG tube.
I had never seen anything like it and don't remember asking why they were using one, but somehow they knew by whatever tests they do that he did not have a strong swallow reflex, or his brain couldn't coordinate a strong swallow with his breathing, or his high arched palate wouldn't allow his tongue to create the bolus. Who knows now. These are all guesses in hindsight because I don't remember if we ever questioned or were told the reasons.
I also don't remember trying to nurse him right away after he was born, but my husband said I tried, and Austin wouldn't latch. I don't know if they tried a regular bottle at that time either, but remember trying 7-10 mL at a time at home along with feeding therapy. I guess we thought somehow the reflex would eventually kick in. He just needed practice.
But there was always this wheezing, rattling, and drowning sound in the back of his throat. We were told because of his swallowing issues (dysphagia) that he was probably aspirating as evidenced by his refusal to take any more drops from the bottle by the end of the day. He was in pain. However, he had not been hospitalized for pneumonia so I guess we thought it wasn't that bad and would be overcome.
But just over a year later when I couldn't take listening to Austin suffer anymore, I recorded his breathing and posted the link on Facebook asking for advice from the medically intuitive cyberworld (other moms on Facebook). The post can be read here along with the link to the accompanying recording: https://www.facebook.com/austin.chase.2011/posts/335191056514591.
But just over a year later when I couldn't take listening to Austin suffer anymore, I recorded his breathing and posted the link on Facebook asking for advice from the medically intuitive cyberworld (other moms on Facebook). The post can be read here along with the link to the accompanying recording: https://www.facebook.com/austin.chase.2011/posts/335191056514591.
Based on the sage advice in the comments section from my expert mom friends, I requested a prescription and got the suction machine a couple days later.
We affectionately, as in the most facetious use of the term, nicknamed it the "Suctionator 5000" (my big kids were watching a lot of Phineas and Ferb at the time).
We have used the Suctionator 5000 regularly for almost 5 years now. Depending on his position it may be needed up to every few minutes (we have to use it more often if he is sitting up or lying on his back). It is the most frequently used piece of medical equipment in the house, in the car, in restaurants, in stores, at school productions, at football games, at the beach, at preschool, at church, and every other location where we GET to cart this nasty noisy machine with us.
We affectionately, as in the most facetious use of the term, nicknamed it the "Suctionator 5000" (my big kids were watching a lot of Phineas and Ferb at the time).
We have used the Suctionator 5000 regularly for almost 5 years now. Depending on his position it may be needed up to every few minutes (we have to use it more often if he is sitting up or lying on his back). It is the most frequently used piece of medical equipment in the house, in the car, in restaurants, in stores, at school productions, at football games, at the beach, at preschool, at church, and every other location where we GET to cart this nasty noisy machine with us.
And I HATE it.
It embarrasses me because it draws attention to his struggle, and because I feel like all eyes are watching us. I can't subtly and quietly save his life. No. The air compressor-like engine along with the dentist chair, wet-slurping sound has to announce to everyone within what feels like a 1 mile radius that I am saving his life.
To make matters worse, it stinks - like feet. Within the first week of operating the machine, I began adding a small amount of mint smelling antiseptic mouth wash to the canister each time I emptied and cleaned it. No one had to tell me to do this. It was a problem that HAD to be solved. A NECESSITY.
The internal battery also has to stay charged to work. All. The. Time. We have accumulated multiple charging cords which are located in the bedroom, the living room, the minivan, and now the school van.
It's heavy, and it always has to be carried or mounted close to wherever Austin is.
And Austin hates it too. He fights occasionally if it's being needed too often.
And did I mention it's GROSS??
So I HATE it.
But I SHOULD love it.
It saves his life everyday. It has prevented his O2s from staying in the 60's,70's or 80's. It has prevented aspiration of his secretions especially when he is sick. It has prevented pneumonia and multiple hospital stays. It has prevented needing a surgery for a trach.
It embarrasses me because it draws attention to his struggle, and because I feel like all eyes are watching us. I can't subtly and quietly save his life. No. The air compressor-like engine along with the dentist chair, wet-slurping sound has to announce to everyone within what feels like a 1 mile radius that I am saving his life.
To make matters worse, it stinks - like feet. Within the first week of operating the machine, I began adding a small amount of mint smelling antiseptic mouth wash to the canister each time I emptied and cleaned it. No one had to tell me to do this. It was a problem that HAD to be solved. A NECESSITY.The internal battery also has to stay charged to work. All. The. Time. We have accumulated multiple charging cords which are located in the bedroom, the living room, the minivan, and now the school van.
It's heavy, and it always has to be carried or mounted close to wherever Austin is.
And Austin hates it too. He fights occasionally if it's being needed too often.
And did I mention it's GROSS??
So I HATE it.
But I SHOULD love it.
It saves his life everyday. It has prevented his O2s from staying in the 60's,70's or 80's. It has prevented aspiration of his secretions especially when he is sick. It has prevented pneumonia and multiple hospital stays. It has prevented needing a surgery for a trach.
So I LOVE it. I love it because it gives me one more day of that smile, one more day of that giggle, and one more day of that belly laugh.
I love it because I LOVE HIM.
I love it because I LOVE HIM.
