Wednesday, July 28, 2010
They FINALLY let me cut their hair for summer!
Here's what they would look like if they chose different styles...
Not looking so identical now! LOL
Not to worry, I did finish the job!
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Monday, July 19, 2010
My boys don't have Down syndrome when they're eating at Wendy's, their favorite restaurant!
The story linked below was forwarded to me through a yahoo group I belong to of families with multiples where one or more has Down syndrome... like me/mine. I'm linking it here because it was just too good not to share. I'd have reprinted it but Dave Hingsburger, blogger and advocate for those with disabilities, has a creative commons copyright on his blog... so I'm sending you directly over to him to read this extraordinary story... A story EVERY parent of a child with Down syndrome, every body whose life is touched by a child with Down syndrome and everybody who impacts the life of a child with Down syndrome should hear!
Click and read... please.
Thursday, July 15, 2010
I know I'm not the only one who's ever felt this way. I can't be. But boy do I feel exhausted... and frustrated with all the child-rearing stuff that's still on my plate after all I've been through. I know everyone in my family has been through it with me... but right now, this feeling of depletion is all about ME! I feel like a terrible mother! I think it's a post-crisis fatigue reflex to compliment my family's gag reflex LOL!
Yes, I've somehow kept myself standing through the past 6 or 7 weeks of my children's' illnesses and hospitalizations. Beginning with a lactose-overload stripping of their intestines. Followed by weeks of diarrhea, vomiting, high fevers, hospitalization, pneumonia, repetitive chest x-rays and experimental treatments, a partially collapsed lung, pulse oximeters, oxygen tanks and more... so much more for my poor little babies. Yes, I've dealt with a bunch of difficult stuff (though recognizably minor compared to what others deal with every day!). I've stayed up [mostly] through entire nights just to listen and watch him, or him, or her breathe. I've slept sitting up in a chair or crunched at the foot of a hospital bed... Only to be awakened multiple times by the beeping of one machine or another indicating some number is not where it should be... some aspect of my child's well-being is in question. I've been knocked down with my own illness in the middle of all this, only to crawl back up onto my knees to keep on praying.
And through it all, we've somehow managed to maintain the potty-training regimen for BOTH boys despite hospital stays with IV hoses, IV fluids, and oxygen hook-ups. Despite our inability to double-team our 2-man team of formerly diaper-clad, sometimes incredibly-stubborn-about-toileting little boys. And, we managed -- with much help -- to get the Old Soul to her socially-important final days of school and end-of-year parties despite the fact that The Sarge and I were sitting bedside vigil in different hospital wards each with our sick little charge. We even managed, very well I might add, to work together to get it all done without disagreement and to still love and respect each other on the other side of our shared crisis.
So why am I so darn bone-tired when things just got soooo much easier? Why am I suddenly feeling inexplicably angry over nothing in particular? Why do I feel like such a bad person for feeling this way NOW after all we've come through? Why do I want to scream at the top of my lungs, "NOOOOOOO! I don't WANT to drive my beautiful little men 60 miles a day to and from a school that I wish they didn't have to go to for Summer!"? Why am I blaming anyone but myself for gaining back a very few lost pounds during these trials and tribulations (sitting on my butt in a hospital room, eating nothing but hospital food)? And with a small but definite lull in our daily activity, why am I not able to carve out a moment of time or energy to refocus just a little tiny bit on myself to eat right and exercise? Now that things have settled down, why do I feel the need to run away [briefly, mind you]... To jump in the car all by myself and drive somewhere of MY choice [not too far away in case my kids need me] to spend a peaceful and quiet moment enjoying the way the sun sparkles on the water's calm surface?
Ah... there's much wisdom buried in that last heartfelt desire!
Yes, I'm more than a few years into this journey but I've just figured out that, at times, there are going to be days, weeks and even months like this. Thankfully, most days my cup runneth over -- truly! -- with the joy and laughter of my beautiful children. But when these hard days, weeks and months hit -- and they will -- I've learned that I have to take the time to refill my own cup afterwards! Like storing nuts for a hard winter, I have to replenish the used-up supply!
I don't know for a fact that I wouldn't have had these same kinds of days if a couple of my children didn't have special needs! Or if a couple of my children weren't twins! Or if maybe I had just a couple less kids! But I promise you, I wouldn't trade my beautiful kids for the world! Besides, listening to my mother's crazy child-rearing stories, I realize it's not about the number or type of kids you have. And it's not about the breadth or depth of the crisis! It seems to me, no matter what kind of kids you have -- kids with special needs, 5 kids, only-children, teenagers, boys, girls -- sometimes this motherhood thing is tough! And when the Post-Crisis Fatigue reflex sets in, only a moment of respite will fill your cup and prepare you for the next wave of life, whatever it may bring.
Wednesday, July 14, 2010
Growing up, I read the story, "Footprints", about a faithful man coming to the end of his life and finally having the opportunity to meet Jesus at the gates of heaven. Throughout his life he'd been promised that Jesus would always walk with him if he believed. As he reviewed his life, he saw there were two sets of footprints in the sand -- one set his own and one set belonging to Jesus who walked beside him as promised. But, he noted, during the most stressful times in his life there was only one set of footprints in the sand. He asked Jesus, "Why would you abandon me during the most trying times of my life?" And Jesus answered, "It was during those times, that I carried you!"
I see the footprints in the sand... and I know that I am NEVER alone! I am surrounded by the footprints of those God sent to help me, love me, save me... Including the unique footprints of my beautiful children who happen to have been born with an extra 21st chromosome. And I know that through my most stressful times, it is THIS gift especially -- my amazing children and their undying, unconditional and all-encompassing love... for me, for life, for all -- that will carry me through my most stressful times. I believe and I thank God for them every single day!
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Sunday, July 11, 2010
This is about people like my husband who has a strong gag reflex that he OBVIOUSLY passed on to our children and who doesn't think it's one bit funny when I laugh til I cry as he gags (ya gotta hear him gag) when a little hard thing in his burger finds its way into his mouth. BUT, even the Sarge belly laughs over the chain reaction gagging we get out of The Boys and the Old Soul!
So here's my latest experience with our infamous family gag reflex.
Our story begins on the long and winding road (you know that song?) home from the James Taylor concert that I was pseudo-forbidden to go to by our Pediatrician. Actually it was the camping, not the concert, he was against after our stay in the hospital. But, I finally got a "not no" answer for the concert without the camping which I took as yes and jumped in the mini-van for a 3-hour drive... a 3-hour drive (are you singing that part to the tune of the Gilligan's Isle theme song?). We drove straight up to Tanglewood in Lenox, Massachusetts to see our collective family-favorite artist perform in a lawn concert. Come on, life doesn't get any better than that, does it? So we enjoyed the heck out of the concert, packed up our oxygen and slept a few hours in a hotel overlooking the Mass Pike before heading home bright and early the next morning. My good intentions were to stop at McDonald's for a quick breakfast -- I didn't say healthy intentions -- as I just wanted to quickly feed the crew. But our GPS brought us WAAAAAAY off the beaten track and then inconveniently lost the satellite leaving us just as lost as the Skipper and his passengers on the Minnow... Right smack in the middle of no where! I tried to backtrack as much as I could remember and finally happened upon a nearly-deserted truck stop cafe. We took more time than I wanted to sit while The Boys ate their favorite breakfast of pancakes (though not my home-made chocolate, chocolate chip pancakes) while the Old Soul enjoyed her beloved bacon and eggs.
FINALLY and painstakingly done with every delicious bite, we headed out as the GPS directed us once again through the deep countryside for miles and miles of twisting country roads intermittently losing and finding it's signal. When I was thoroughly sure we were hopelessly lost I spied the little green highway sign for the Taconic Parkway -- our planned route home, but one I was sure I wasn't going to see again. Massively relieved to be finally on a known, major roadway, pointing steadfastly in the right direction and productively on our way home, I put the pedal to the metal to meet the increased 65 mph speed limit. Within minutes we were zooming along the scenic Taconic when Michael began with a small little cough. When you have 3 children recovering from pneumonia, a small little cough here and there is to be expected. But this one persisted, as though My Little Man had something stuck in his throat. (Probably one of those pneumonia-producing mucous plugs I swore didn't exist because he never coughed up a thing during his 15 days in the hospital!) I suggested he take a drink of his readily available apple juice and he obliged. But soon thereafter, the cough escalated to a near-but-not-quite choke. I scanned the horizon for a place to stop, seeing only the "15 miles to next exit" sign in view. For those who have never traveled the Taconic, there's much beauty but NO amenities on this road... and NO SHOULDER! With budget cuts in New York State, the road crews barely cut back the tall grasses and weeds on the sides of the roads these days... I kid you not. So, as the cough became a choke and the choke became a gag there was literally NO WHERE for me to pull over! Not for another 15 miles!
The gagging worsened and the Old Soul began yelling, "Mom, he's going to throw up! Do something!" I'm sure she wasn't happy about it, but she was right and there wasn't a thing I could do! He finally blew and projectile vomited all over the back of the car. With steep gullies and woods on either side of the road there was STILL NO WHERE FOR ME TO PULL OVER safely or otherwise! I certainly couldn't stop in-lane on a well-traveled 65mph highway! So I prayed he wouldn't choke and we both continued, the Little Man vomiting and me driving, frantically looking for a break in nature! Either his vomiting or the trees!
And here's the truly laugh-out-loud funny part: As the Little Man vomited, the Big Little Man looked on and began to gag himself. He gagged louder and louder and longer and longer, watching his little broey throw up. Not able to take his eyes off of the gruesome scene he continued gagging, sounding just like his dear old Dad. Long guttural gags that started in the toes and growled their way out of his little body sounding like they were coming out of a 200-lb, nearly 40-year-old man... just like his Daddy! Seriously LMBOing! Ultimately the Old Soul succumbed with her own gagging as I yelled at them both to, "LOOK AWAY! DON'T WATCH!" while still trying to vocally comfort my poor Little Man who, I could see in the rear view mirror, was still blowing his breakfast all over the car. My back seat was a scene straight out of a Monty Python movie! Me? I was crying -- because I was laughing so hard -- still searching the roadway for the break I needed that FINALLY came.
I barely fit the car onto the little strip of mowed grass (probably where the State Troopers sit as a jump-off to catch speeders). I couldn't get out the driver's side as my door would have been ripped from it's hinges by passing cars flying by at 65+ mph. I couldn't get out the front passenger door as the space was fully occupied by the huge oxygen-making machine loaned to us by the hospital, blocking my access. So I climbed into the fray of the back seat only to realize the sliding door was child-locked from the inside. COME ON! Back up front, hospital-property be damned, I climbed over the machine, out the door and threw open the sliders. The Big Little Man still gagging, the Old Soul staring out the opposite window as if ignoring the chaos beside her, trying to keep her mind from thinking about what was happening and barely able to control her gag reflex, while the Little Man sat quietly amidst the wreckage. Yeah, now he stops!
I quickly check the glove compartment, under the seats, in the door and seat pockets... There is not a single napkin or paper towel in the entire vehicle! THAT never happens! I horde fast food napkins for such occasions! But the Sarge took my bus through the car wash and cleaned up inside for the trip. Love that guy, but this time his timing was impeccable! With 2 potty-trained little men, my mind did not automatically go to wet wipes but did ultimately recall the bag tucked underneath the back seat with a few spare diaps, undies and half-used container of wipes.
Thankfully, JUST before the melee, I'd told the boys to take off their shoes and socks and settle in for a comfortable trip. So my Little man was barefoot. I sponge bathed the Little Man's legs, arms and face with wet wipes; carefully removed his shorts, wiped down his booster and covered the damp seat with a couple of the spare diapers laid open. For the first time in my 8 years as a mother, I was grateful for the projectile part of vomiting because the only clean shirt we had was the one he was wearing and it was still, miraculously SPOTLESS! Through my own intermittent fits of laughing and gagging, I was able to clean up the car to the point where the Old Soul was actually able to look without gagging herself and compliment me, "Wow Mom. You did a good job with just a few wipes!"
After I tied the knot on the garbage bag and we got underway again, my beautiful little girl expressed how dumbfounded she was at how I could stand to clean up such a HUGE and disgusting mess... and why in the holy heck was I laughing while I did it. I explained first that I just kept telling myself, "it's just spilled pancakes and apple juice" because that's all The Little Man had eaten! Then, laughing at the thought, I added that someday, when she was cleaning up after one of her own children who had thrown up, she'd remember THIS day, and remember me laughing and would laugh about it herself. She hesitated and then replied,
"I don't think so!"
I wish they had this in Penn Station when I was commuting. You can bet I'd take THAT Fast Lane EVERY SINGLE DAY! I mean, seriously.... Why walk when you can glide through life?
Never pass on an opportunity to have a little fun!
Watch the video by clicking the pic and think about it... seriously. Then click the back arrow when you're done and let me know if you'd jump on or pass! And whether you think you'd regret passing if that was your choice...
Personally, I can't imagine having any regrets for taking this path of least resistance and more fun!
Monday, July 5, 2010
So there we are, sitting around the ER triage bed when the doc comes in to examine my sick Little Man. As he prepares to put the stethoscope to my baby's chest, he hears the faint sound of giggling behind him and turns to see my Big Little Man and the Old Soul playing quietly underneath a table in the corner of the room. He looks at the boy under the table, back at the boy in the bed, then back again at the boy under the table playing with his sister. The Sarge and I smile to ourselves as we see the twin recognition slowly creep into the doctor's brain. We proudly confirm his unspoken suspicions, "Yes, they're identical twins". At this point, the doc leans in as if he's going to share some intimate secret with me and says in a hushed tone, "So, do they both have.... (he leans further in and looks me earnestly in the eye)... autism?"
I lean in dramatically, preparing to bestow the wisdom of the ages upon him and say out loud and with the great pride, "No, actually! Neither of them have AUTISM. But they do both have Down syndrome."
Seriously.... This man has a degree in medicine? Don't they cover genetics in medical school anymore? I'm pretty certain they cover it in most High School Biology Genetics units. Anyway, the Sarge was ready to get up and leave right then and there (LOL) no longer trusting the man to treat our child. Fortunately, the powers that be swiftly intervened with an ambulance transfer to a highly reputable children's hospital on the north shore. Fortunately, folks there recognized that my son had Down syndrome OR at least had the good sense to keep it to themselves if they didn't. Probably better that way.
Sunday, July 4, 2010
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!
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.
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!
Friday, July 2, 2010
I think I knew that our Monday morning visit to the Pediatrician was a formality. By Sunday evening, Sarge and I were pretty sure we were dealing with pneumonia. My research said that most pneumonia's are treated at home so I didn't know enough to take my poor sick Little Man to the ER on Sunday (or even better, on Saturday). I did call the Pedi's emergency line on Saturday evening and explained my Little Man's rapid shallow breathing and high fever... but because he'd already started on antibiotics, I was advised to wait one more day to see if the medicinal effects kicked in. I know some of you must be gasping and thinking I'm an idiot but I hesitatingly agreed. I guess I didn't know any better.... this being my first experience with pneumonia...
Pedi said my Little Man's blood oxygen saturation levels were way too low (81) and with crackling lungs we were likely dealing with pneumonia, but would need a chest x-ray to confirm it. I drove straight from the Pedi's to the local hospital with all 3 sick kids in tow and my Blue Tooth lodged in my ear to alert Sarge that he needed to leave work and meet us there. The ER parking lot was full and as I slowly and carefully (I swear!) backed out of the over-packed lot a rude and impatient lady screamed at me. I opened my window and kindly said, "I'm sorry. We're all experiencing tough times here coming in to the ER" to which she replied, That's right BIT** followed by extraordinary expletives the likes of which would get me kicked out of the blogosphere if I repeated them, I fear. We met up with her again on the inside. But when I carried my little man in and signed in at the desk, they IMMEDIATELY whisked him into the ER triage (some small satisfaction that my emergency was apparently more critical than hers so she had no business yelling at me like that!) The x-ray confirmed the Pedi's diagnosis and the Little Man was immediately put on 02. After awhile, the ER MD said they were not prepared to deal with my Little Man's oxygen requirements and had arranged to transport him to the Schneider's/Cohen's Children's Hospital on the north shore via ambulance.
Our first ambulance ride! Lights, no sirens!
Long story a bit shorter, after much debate and varied treatment over several days it was determined that the Little Man had a nasty case of what turned out to be viral pneumonia. At one point part of his lower right lung folded and collapsed but quickly re inflated apparently (that was the good news). I spent 20 hours per day in the Pediatric ICU, relieved by the Sarge for 4 hours in the afternoon to go home, shower, dine and spend a few hours with my other 2 children before returning to my Little Man's bedside. On the 5th day during my 4-hour respite, I noticed my Big Little Man breathing hard, shallow, fast. I called the Pediatrician's after-hours emergency line to express my concern. At this point in the Little Man's treatment we were still operating under the impression that we could be dealing with a bacterial pneumonia which MIGHT respond to antibiotics. So, in an effort to avert disaster with my Big Little Man who was on day 7 of a 10-day round of Omnicef, I asked if I could get a stronger antibiotic? Our Pedi said there really wasn't anything stronger and if the Big Little Man was going down the same path as his brother there was little we could really do about it. The next morning at the Pediatrician's, my Big Little Man's blood 02 levels were at 87. Without hesitation, the Sarge drove up to the Children's Hospital for the all-confirming x-ray. If we were going to have 2 kids in the hospital, it might as well be the same hospital.... And so it was.
My Big Little Man was admitted to the Pediatric floor with a lesser if not identical case of his brother's viral pneumonia. The seriousness of his brother's condition playing into the decision to admit.
Day 8: My Little Man (left) was allowed out of ICU to visit his broey on the Pediatric floor...
But broey couldn't leave the Peds floor even though he wasn't as sick... weird huh?
The Little Man spent 15 days and nights in hospital, 12 of them in ICU. The Big Little Man did his time -- 7 days and nights -- on the Pediatric floor. We're all home now, thankfully, though the Little Man still requires oxygen at night. His lungs were harder hit and will therefore take awhile longer to recover.
So here's what I learned:
- Fluid in the lungs develops as a function of the illness/virus and worsens due to inactivity. Activity helps the body to reabsorb the fluid automatically. Inactivity lets the fluid sit there... and increase. This is why so many older and/or post-surgical folks develop pneumonia, the inactivity promotes the conditions prime for developing pneumonia.
- Because of the moisture and reduced lung capacity, spots of pneumonia begin to develop and grow. I thought the fluid was pneumonia and that one either had pneumonia or didn't. But the docs talked of pneumonia as areas of pneumonia. More like it was mold on a bread. My analogy! For example, my Little man had "a large pneumonia in his right lung on the lower right lobe and 2 smaller ones in the same area."
- Unlike pneumonia, other respiratory afflictions have a generalized -- all over the lungs -- sound in the doc's stethoscope. Pneumonia is localized to the spots where fluid has built up and pneumonias have developed. This localization is a telling difference.
- Oxygen helps heal the lungs, helps the sufferer breathe deeper and reduce the fluids... drying out and reducing the pneumonia spots.
- Pneumonia in the lower lobes of the lungs are harder to cure because they're sitting in the fluids, thriving.
- Viral pneumonia -- like viral anything -- does not respond to antibiotics. If antibiotics are prescribed it's to address and/or prevent secondary infections.
- Docs will often run viral panels testing for hundreds of known viruses because knowing which virus you're dealing with can provide clues to how the virus will react, how long it will take to dissipate, and what co-symptoms may be present (like fever). For the comfort of the patient, meds may be prescribed to ease the symptoms... but NO meds will cure viral pneumonia. Viruses must run their course. (They could not identify the virus that caused The Boys' pneumonia.)
- Bacterial pneumonia is treated with strong antibiotics. How do they know and/or differentiate between the two? If the prescribed antibiotics don't reduce or cure the pneumonia then it must be viral. (That's why it took some time to ascertain our diagnosis of viral pneumonia.)
- Viral pneumonia is also recognized/diagnosed when it doesn't respond or progress in any prescribed fashion... which is indicative of a virus. It improves and degenerates, ebbs and wanes on it's own time clock. It's a 2-steps-forward, 1-step-back affliction. And, generally, the oxygen requirements slowly follow behind the recovery with 02 levels lagging significantly behind the clearing chest x-rays.
- Asthma, sleep apnea and heart defects exacerbate pneumonia because they further challenge the sufferers' ability to breathe. (My Boys do not have any of these conditions despite the docs' insistence that these were likely playing a part in their slow recovery. Tests confirmed that I was right, The Boys don't have any of these conditions.)
- The prescribed treatment for viral pneumonia is oxygen and time. All the other stuff they throw at the sufferer may or may not help. They could effectively address secondary issues -- which my guys didn't have. They may do absolutely nothing -- in which case, why do them? Or they may make them worse. My Little Man suffered agitation, the shakes, full-body weakness to the point where he couldn't stand and a rash all over his torso from the Albuterol treatments (generally used to address swelling of the airway in asthma).
- Generally, coughing up the mucous stuck to the walls of the lungs and airways is a positive thing when dealing with pneumonia. There are several ways medical professionals address this. The old fashioned way is by patting the back hard with cupped hands (called "chest PT or physical therapy). The hospital also has several size suction cups to use instead of cupped hands... very effective but The Boys HATED them. The Thera-vest is a life-vest sort of contraption that fills with air and then pounds their lungs from back and front for a 10-minute session. They do this every x hours. The Little Man had it every 6 hours... and was very annoyed each time... especially at night. And, finally, in severe cases, a contraption is attached to the bed and pounds the bed-ridden patient at automatic intervals. Thing is, if mucous plugs -- as they're called -- are not seen in the x-rays, none of these more extreme treatments are necessary. Us? I cupped my hands and patted their backs every time they coughed and in between, to encourage passage of mucous. This is just a good practice for any coughing or congested child.
Day 11: The Little Man's Thera-Vest treatment (notice the blurred hands indicating rapid vibrating).
Finally, how did/does the fact that my beautiful Little Men also have Down syndrome play into this health fiasco? The answer is.... hardly. In fact, because my boys have no congenital heart defects related to their Down syndrome or otherwise, that did not contribute to the reduced blood oxygenation levels though many a doctor and resident suggested that as an explanation for their slow recovery (until they tested just to be sure I wasn't lying, and found the Boys didn't have any heart conditions). Additionally, my boys had tonsillectomies/adenoidectomies last year to address the sleep apnea issues that sometimes afflict children with DS. For the record, people with DS do not have large tongues, rather, they have slightly smaller oral cavities (mouths) and normal-sized tongues and tonsils. Having that surgery means that my boys' airways are clear and the reduced oxygen levels cannot be excused as a result of such obstructions.
Finally, and, in fact, the only area that their having Down syndrome came into play in this pneumonia scenario, was their slightly lower muscle tone. My guys actually have pretty high muscle tone for children with Down syndrome, falling in the low range of normal (like their mama LOL). Still, their lower muscle tone made/makes for a longer recovery period. That is, because the lungs and diaphragm are muscles, their lower tone and this period of inactivity means it's going to take them a bit longer to recover their previous tone than in a person with high muscle tone. Like everyone else, under using a muscle results in atrophy. To regain the tone, working those muscles out via activity is the only way to address this... which is why the Pedi sprung us from the hospital... with oxygen. The Boys needed to use their lungs, to breathe deep, to suck some wind. It would be like you or I (unless you, the reader is a marathon runner... rest assured the writer is NOT) suddenly getting up to run a marathon. We'd be winded over and over again during practice runs until our lungs and diaphragm learned to accommodate the extra activity. The Boys are practicing to run their very own version of the marathon called post-pneumonia life. And they're kicking butt.... slowly!!!
Yes, pneumonia is a double edged sword. You must get enough rest to clear the infections but also get up and move to clear the fluid from your lungs (which the body will reabsorb with activity) and to exercise your lungs and diaphragm to recover. Too much of the former will make the latter more difficult. And too much of the latter will make the former worse. Now that The Boys have cleared the pneumonia spots or infections, we're walking that fine line between rest and regaining our former muscle tone while avoiding a relapse of pneumonia. We're not quite there yet but we can see their progress every day if not in their blood oxygen levels, then definitely in their respiratory rates. The rest will follow in it's own time.
End Note: For all you parents out there, whether your child has Down syndrome or not, I strongly suggest you have your Pediatrician check your healthy child's blood oxygenation levels with a simple office pulsox (not sure I'm spelling that right but every doc should have one). This will give you a baseline reading for your child should you ever need it. Never having checked The Boys healthy oxygenation levels, but because of the longer recovery time, the MD's began making assumptions that the high 80's might be my Little Man's baseline oxygenation level and they were planning on cutting him loose prematurely -- a potentially deadly decision with viral pneumonia. Fortunately, we knew deep down that his hospital numbers were still low. You see, we have a control! My Big Little Man, his identical twin brother, is running several days ahead of the Little Man in his pneumonia recovery. And his oxygenation levels are several points higher and rising. That's a pretty good indicator that the Little Man's numbers will keep going up. The Sarge and I are confident that the Little Man's numbers will continue to rise with the prescribed treatment for pneumonia... time and oxygen.