My New Normal? God Help Me!

FIRST NIGHT HOME FROM THE HOSPITAL:

The pulsox beeped literally ALL NIGHT LONG,. The machine I’ve come to refer to as “the reducer” reduces (hence the name) the 02 level to 3/4s of a litre per minute no matter what I turn the oxygen-making machine to. I can’t get more oxygen, therefore I can’t get the Little Man’s osygenation levels up to the prescribed 92 or above. I’m up all night struggling so my Little Man doesn’t have to. It doesn’t work for either of us. The next morning, I call the 02 supply company but they don’t call back. Before bed the Sarge and I reconfigure the reducer out of the loop so I can resume implementing 1 to 1 1/2 litres/min so my Little Man can breathe.

SECOND NIGHT HOME FROM THE HOSPITAL:

10:16 PM — Pulsox beeping. Oxygenation has fallen below 92. Silence the alarm. Check the sensor on the Little Man’s finger. Stick the cannula back in his nose. Unravel him from the tangle of oxygen tubes and sensor wires… a little scary thought that he could strangle and I need to find a better method sniggles into my sleep deprived brain. Doesn’t help me sleep any!

10:24 PM — Pulsox beeping. Oxygenation has fallen below 92. This isn’t going to work. Turn up the 02 machine, check the sensor on the Little Man’s finger, replace the cannula in his nose, unravel the tangle of tubes and wires from his incessant tossing and turning and go back to bed.

10: 39 PM — Pulsox beeping. Oxygenation has fallen below 92. Darn it. Check the sensor, it’s pulled off his finger. Relocate it to his big toe to keep the wires away from his neck… that’ll work! Oxygenation rises slightly. Check the cannula. Oh well, best I can do, I think.

10:53: PM — Pulsox beeping again. Seriously! I’m never gonna get any sleep at this rate. I turn the level down to 90 and the beeping stops.

11:15 PM — Pulsox beeping! Turn the 02 machine up to 2. To heck with trying to wean him from his overnight 02 requirements. He’s OBVIOUSLY not ready for that yet! Oxygenation level goes up to 96. I’m happy! But more importantly, he’s oxygenated! AND SLEEPING!

12:21 AM — Pulsox beeping. He’s wiggled the sensor off his toe. Relocate it to his tall-girl toe. Figure he has a lot less mobility in that digit… I mean, she’s nearly useless on the hand except to hit the “L” or “O” on the keyboard, right? Seems to register his oxygen levels even better than on his big toe.

1:30 AM — Pulsox alarm says the sensor’s not working. Check all the connections but nothing appears amiss. Replace the pulsox sensor with the other one they gave me that’s nearly as beat up. Does the trick for now.

2:59 AM — Open my eyes to peek at the pulsox. It hasn’t beeped in over an hour. Reads 95. That’s cool. Back to sleep.

4:19 AM — The Big Little Man scooches over to use me as a pillow and kicks the Little Man in his sensor-laden foot. Pulsox beeping. I retape the sensor and fight heartily to keep the Big Little Man from kicking his broey. I finally opt for dragging him back up to the head of the bed and snuggling with him sandwiched between The Sarge, the body pillow and the Little Man. NOT comfortable but it works. He’s asleep again.

4:39 AM — I wiggle away to the foot of the bed and grab some elusive sleep.

6:31 AM — Wow almost 2 hours of uninterrupted sleep. How did THAT happen. Check that my Little Man is still breathing (a rational fear given the circumstances). He is. All is well. The morning light is creeping up on the horizon. I roll over and sleep… my eyes off the pulsox for one minute.

6:58 AM — Pulsox beeping. Of course it is!

LAST NIGHT:

11:37 PM — Big Little Man up with raging diaper rash due to meds from his pneumonia… a minor post-hospital-stay potty-training set back. He can’t sleep. Too itchy! I change his Underjam, wash and dry, re medicate with Nystatin and slather with Triple Paste. Fingers crossed as I drift back to sleep.

12:38 AM — I’m UP! Big Little Man moaning and groaning due to aforementioned diaper rash that goes all the way down the inside of his thighs. Wash and dry him and lay him open to “air out” for a few minutes before changing his Underjam and re medicating. Rinse, slather, repeat.

1:40 AM — Big Little Man tossing and turning, moaning and groaning. Diaper rash is killing him… killing me too. Go through the motions again. He falls asleep in my arms.

3:15 AM — I fall asleep too. Must be tired or something. I carefully peel myself away and crawl to the foot of the bed where there’s a square inch of empty space I can claim for my own.

Boy am I tired.

TONIGHT:

10:05 PM — bedtime

10:55 PM — kids actually fall asleep (Hospital stay has resulted in a major upset in our usual 8-9:00 PM bedtime schedule).

11:21 PM — Hovering like a ghost over the bedside, the Old Soul scares the bejeebers out of me from a sound sleep where I crashed sandwiched between The Boys. “Mom, I can’t shut my mind off and I’m a little scared sleeping by myself!” (Poor baby, must have been the abandonment she felt when the Sarge and I spent 24 hours/day in the hospital for a week with her brothers.) Me: Ok, babe, lay down I’ll be right there.

11:27 PM — I manage to peel myself away from The Boys without waking them, carefully replacing my big old warm and soft body with a huge feather-stuffed body pillow. Smart huh? Helps keep them from kicking each other in their sleep too!

11:55 PM — Pulsox alarm goes off. I manage to peel myself away from the Old Soul without waking her… the cats were not so lucky. I silence the alarm. Check the toe sensor… still in place. Check the nose cannula… it’s shifted out of the Little Man’s nose. Replace it. Watch him itch it back out. Replace it again. Watch him itch it back out again. Replace it… sticks this time. Pull 2 small pieces of fabric medical tape off the roll (found out the regular stuff gives him contact dermatitis all over his face) and carefully place them over the tubes at the sides of his head to help hold them in place. He’ll hate me for that in the morning but it’s the only way any of us are going to get any sleep…. OK, it’s the only way I’M going to get any sleep.

12:01 AM — Slide into my corner of the midnight world at the foot of my king-sized bed that’s been completely usurped by The Boys… Pulsox quietly pulsing away literally barely tucked under my pillow glowing in my face. I’ve learned that it’s easier to sleep with the infrared light in my eyes so when I open them I can quickly see the Little Man’s oxygenation level and know that he’s safe than it is to sleep worried that he can’t breathe.

12:49 AM — Preternatural sense that Bubba, my Chow Chow, is staring me down… Well, maybe I heard her panting in my sleep haze or subconsciously caught the faint click-clic-slide of her little paws on the bare stairs. Regardless, there she is…. OBVIOUSLY she has to go to the bathroom. Darn it! I quietly shimmy over the bed-rail, kick the magna-doodle and limp down the stairs with one VERY happy dog. She sits out in the cool night air for several minutes so I open my blog and tap out a few thoughts…

2:02 AM — Time to go back to bed! Just about every living thing in our house has had a turn waking me from my “peaceful slumber”. No use trying to catch up on lost sleep from our 15 day sting in the hospital. Thankfully, the Sarge is self-sufficient these days with his climate-controlled, oxygen-delivering sleep apnea machine. Uh oh… I hear my Little Man moaning. I wonder what his problem is. The nose cannula is taped in place and the pulsox is not beeping. Gotta go see and reclaim my corner of the mattress… surrounded by my children hearing them breath just a little bit easier tonight than last night. And just a smidge easier than the night before that. Thank GOD!

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
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3 Responses to My New Normal? God Help Me!

  1. Stacy says:

    Oh Maggie, most people will read this and feel so sorry for you.. I on the other hand and reading this with a smile on my face knowing that I am not alone in the sleep deprivation category right now. Since Caleb has broken his femur our nights have been terrible. Barely 4 or maybe 5 hours a sleep a night. He is so miserable at night and this cast he has on allows him no movement, so he's so mad that he cannot get comfortable. I am not happy that you are in this situation (you are in my prayers), I am just comforted knowing that we are both growing stronger by being doubly blessed with our children. Perhaps someday we can come together and share our blessings with each other 🙂

  2. My 11 year old ha Down Syndrome. He came home on O2 an a pulse ox. We didn't sleep for te first two weeks because of instances like you've described. We thought we'd never get used to it. Eventually the drs felt he didn't need it so the equipment was picked up. We didn't sleep for another two weeks because we'd gotten so used to it.I'm so glad I found your site.Would you be interested in contributing to a group blog dedicated solely to special needs?Let me know if you'd like to hear more.Valerievalmg2 AT gmail

  3. MaggieMae says:

    Yes, Val. LOL I've gotten used to the beeps and seeing numbers that make me feel comfortable. NOT having it would make me fear the worst… my baby de-saturating to what might be dangerously low numbers that starve his body and brain of oxygen. I'm going to have to test my 3 kids intermittently through the night as they sleep to set my expectations and make sure My Little Man is keeping up before giving back this equipment.

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