Day 1
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.
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Take A Walk on the Happy Side 
