Admission Day 3....

Yesterday was a bit exhausting. Most of it was spent waiting, although it wasn't really clear what we were waiting for.

Plastics and ENT were in again and decided yet more blood work would be needed. At supper time our nurse, Stacey, came in with another plan. More scans tomorrow, repeat labs and a consult with ID/Immunology. I had ENT recheck his ears since he was holding them. I didn't figure there was much point being admitted if it was a simple ear infection. After all babies/children with clefts are at risk for more ear infections and fluid build up. ENT took him downstairs to the clinic and had a good look with more specialized equipment. He saw no sign of infection, a tiny bit of fluid which he felt was insignificant and cleaned out Ben's ears since Ben was being so cooperative. So no infection and super clean ears...not really what I had wanted. At least with an ear infection we could have gone home.

I wondered why we had yet to start IV antibiotics since it looked like that was where this was heading yesterday morning. The poor nurse really couldn't help much. She didn't have the labs to review and all the information she had from the doctors is that his WBC didn't appear to point to infection although it was abnormal (I was confused as to what that means exactly) but all his other inflammation markers are "sky high". So for now the plan was to wait, watch and make attempts to control pain. The plus side is the aspirate from the lump was negative for infection so at least it isn't an abscess. Hopefully it is just scar tissue.

The pain control hasn't been great if I am honest. From his last exam at 1500 to 2320 last night he was so uncomfortable. He would scream, hold his jaw and ear, finally pass out from exhaustion only to wake a few minutes later screaming uncontrollably again. Our nurse over night, Amanda, tried the normal Advil and Tylenol protocol which did pretty much nothing. Amanda came in and allowed me to go downstairs to get a drink and some food since I had been in the room all day. She noticed he was clearly in pain and not just fussy. A late night consult with an ENT resident, whom to be honest looked scared to death of poor little screaming Ben, ordered Morphine. This allowed enough pain relief for sleep. He continued to moan and sob off and on all night in his sleep but he was able to rest.

Concerns are that it is early osteomyletis which hasn't yet taken hold as he was on strong antibiotics for so long, some other infection starting somewhere, some other disease process or genetic condition. There is also the possibility they won't find out what is causing it and we will have loads of follow up to try and figure it out.

The doctors aren't yet comfortable to send us home. Perhaps once they labs and new scans are in they may change their mind and let us go tonight or tomorrow morning. They seem to want answers as badly as I do.

For now Ben is back nothing by mouth. He will need to be sedated for his bone scan and MRI. The plan is to head downstairs at 11am for they dye injection then come back up here to wait for him to be sedated.

I will hopefully have more to update later on. Fingers crossed all goes well.