Osteomyelitis meaning bone infection. Example of a really bad luck.

I have not blogged in such a long time! That’s my longest break since the beginning of this blog! I have some catch up to do. I guesss Facebook makes one lazy, I value my connections there but it does not leave me much time for a deeper insights in writing.

So we are back on track.

Shortly after my last post our sweet word slightly turned upside down. What seemed to be a routine tonsils and adenoids removal surgery became a six months recovery but let’s start from the beginning.

After Amelia’s sleep study in December her ENT doctor decided that due to severe obstructive apneas we need to remove adenoids and tonsils. And it was good idea as it turned out she had very large adenoids which caused severe breathing difficulties. Last few weeks before the surgery in January she could hardly sleep at night, only when I was carrying her in my arms in upside position. We both were extremely exhausted and I was looking forward to that surgery which supposed to bring a relief. 

Surgery went great, no problems but Amelia had to stay in the hospital for few days because her oxygen level was low. Luckily it picked up and stabilized on a satisfactory level. My concern from the day 1 after surgery was Amelia's pain. To the doctors it looked like normal pain after that type of surgery (throat area) and I heard from many  LP parents on FB that recovery after T&A surgery is a mess. She was on strong pain medications and still it did not seem to help. I remembered Amelia after her decompression surgery when she was only 5 months old. She did so much better then! I could not understand that.

Days and weeks passed but the pain was not going away, only getting worse but after checking several times doctor said that everything is healing all right and reassured us that the pain is normal. We were having problems with Amelia's simple activities - putting on clothes, sitting her up, etc.

She had no fever so nothing was really alarming.  I knew that something was not right but doctors kept waiting for improvement.

Finally a month after surgery during check up ENT doctor finally concluded that this type of pain (she was screaming after any head movement) is a sign of something more serious and send us to Emergency. Amelia had MRI, X-ray, CT scan and bloodwork done the same day and it was finally discovered that she developed  osteomyelitis - a severe infection that spread to the spinal bone (affecting her already very sensitive area of C1 vertebrae, where she is at risk of foramen magnum compression). This type of infection happens very rarely (one in a million?) and of course Amelia had to be the chosen one like she already did not have enough on her plate. Hard to justify, hard to understand. Doctors said it was a terribly bad luck. Ugh. At least there is hope that she exhausted her pol of lifetime bad luck. 

After several days of hospitalization it turned out that few respiratory bacterias (including pneumococcus) found their way deeper through the incision, infected the soft tissue and the spine so Amelia ended up on very strong antibiotics IV and in the "minerva collar" (which covered more than half of her little body) to stabilize the spine, facilitate healing and prevent injuries. She was living in that 24/7 for 3 months. 

For a few days we were living in terror not being sure if the antibiotic will help and if the infection won't touch the spinal cord or get to the blood system. Luckily none of that happened! ENT doctor flushed the infected area (same night after they admitted us to the hospital) and the waiting game had begun. We were kept in the hospital for a week until they finally narrowed down the bacteria which caused this turmoil and established the antibiotic protocol which we continued for a month through IV port (Broviac catheter) three times a day. Improvement was tremendous! Amelia  fairly quickly adjusted to the brace, going about her chores without even paying attention to this constraint. 

Amelia was such a trooper! Adjusting, adapting and not loosing her amazing smile and spirit. Big lesson learned. We did, she did not have to, she came down from the skies to teach us :-)