The Gauntlet

So for those of you who may not be up to date or aware of the current happenings at the Scott Clan we had another little bump. Will decided that he missed all his friends at the NICU and wanted to make some new ones up at Primary Children's Medical Center. Alas I seem to have gotten ahead of myself.

Jamie called me on Monday right smack dab in the middle of lunch. I could barely discern what she was saying over Will's screams of injustice! He had been crying since 10:00 AM and hadn't stopped. For those who are familiar with Will, or have read this post, it should be obvious that our boy doesn't cry unless he has a reason (needs a change, hungry, binky in his ear) and quickly calms down once a need is satisfied. When I arrived home about 1:30 he still hadn't stopped crying. I held him while mom took a nap. He calmed down for a few moments in between outburst. Unfortunately though dad has a job which requires talking to people so at 3:30 Jamie took over again so I could join a conference call. The good news is that the conference call went well.... the bad news is Will didn't. Within 20 minutes he became completely congested and was struggling to breathe. Oddly his nose had almost nothing; it was all in his mouth and throat. We would suction it all out and it would reappear before we were finished. Additionally (unbeknownst to Jamie due to dad's super sleuthy skills) his right side of his neck began to swell effectively taking out what was a neck. In calling our wonderful pediatrician's office the nurse quickly said 'Just come down to KidsCare it isn't a big deal, but they can't see you for an hour and a half'. Being good little sheep we followed.

We bundled up Will and I suctioned him as mom drove with all care and haste. We arrived early to KidsCare to be greeted by a nice elderly lady who was completely incompetent. Yes I am harsh, but she was. So after bringing in ALL the other patients (skinned knee, fever, mom's jonesin' for crank) they let in the child with respiration problems. Seems logical to me. Immediately upon getting in the on-call doctor is concerned and requests and ENT (ear nose & throat) consult. They all say rush up to Primary Children's. Thanks to the nurse at our pediatrician for not asking (or possibly caring) what was going on we got to watch our child suffer for two and half hours for no reason. We back tracked to Primary Children’s.

Primary Children's was ok, other than no one had relayed the information from the KidsCare to them so we did the whole thing all over again with a new Resident. I'm sure he is/was good at his job, but as a parent you want the Chief of Medicine not the newb. We hung out in a small little room for 5 minutes until the nurse freaked out, then 15 minutes in the other room 'til the resident freaked out and then FINALLY we got treatment. While it seemed like a blessing Will was immediately encircled by doctors, specialists & nurses. Literally 12 to 15 people would encircle him as they tried anything to get him back up. Long story short they had to shove a pipe down his throat to bypass his upper respiratory problems. They induced paralysis so the ventilator could take over. By this time his neck was no longer visible as it had completely swelled up. He was breathing but no one knew what the problem was. Two hours later we were admitted to the PICU (Pediatric Intensive Care Unit).

Hours and hours pass. We still have no idea about why these problems have come on, no bug bites, no respiratory problems (asthma, pneumonia, etc.). The spinal tap (cerebral spinal fluid) yielded no disease at all. This was a mixed blessing. He didn't have meningitis but we still didn’t know what he had.

After spending the night sharing a 2x5 couch Jamie and I were pleased to find that they had found something in his blood and that he had a strong reaction to antibiotics. Unfortunately they still didn't know what it was. The rest of the day passed away with Jamie and me hangin' with our boy. Jamie's mother was kind enough to speed down to the rescue which has been a wonderful blessing.

While I would like to say everything is fine, it truly is not. Will is somewhat stable but no one knows what is going on with him and what is causing these problems. He is hangin' in there like a trooper but it is rough. I do have to say it has given a lot more perspective, understanding and empathy for parents that have to go through this and worse. As a child I always wondered why my aunt had such a difficult time, twenty years after the fact, of moving past her child’s early passing. I still don't assume to know what she went through and such a statement would be an insult to her, but I can at least truly begin to fathom what that experience may have been like. It brings chills.

While this post is a bit of a downer the upside is that because of Jamie's excellent maternal instinct and insistence something was wrong Will is still with us. Because of the superior medical training & abilities of the staff at PCMC he will continue to stay with us. The future looks good; there shouldn't be any long-term repercussions but the present, that is where the challenge lies.