Sun March 28th: fever -thought it was ear infection - no big deal.
Mon: flew to dallas
Tues: still had fever - went to urgent care. no ear issues - just some sort of bug - lots going around
Wed: no more fever but stopped eating. sore throat?
Thurs: went to er at Childrens hosp in dallas. got fluids all day but they wouldnt run bloodwork and I think wanted him to go back to va. APRIL FOOLS ;)
Fri: flew home to va. spiked small fever in evening. talked to dr and decided to give motrin and go to ped office in am.
Sat: saw dr on call, j not too bad at that point. it was decided we would go home and watch him. eating and drinking a bit better. by time we got home he started staggering around. we turned right around and went to fauquier county er. they were great - ran labs, got fluids right away and admitted him. everyone very helpful and worked on getting him to uva gi docs monday.
Easter Sun: feeling better but still not eating much. Annie and Rob brought us champagne and Blooms fried chicken for Easter dinner. awesome! James chowed on chocolate.
Mon: transferred by ambulance to UVA that night. This way we could keep his iv in (fourth that week). Unfortunately, in a shared room with 6 week old baby. Nobody slept for four nights between beeping ivs, crying, screaming, pooping, and vomiting. Lovely.
Tues: Bloodwork and urine labs not looking good. Did barium swallow study - all normal. Kidneys affected by malnutrition and dehydration (yep, can happen that fast on a kid like James, even though we'd been at drs from the beginning of this illness), or maybe underlying kidney problem - rare and scary syndromes listed. Placed NG tube that night (tube down nose into stomach). Absolutely horrible to see especially when it is the one thing we really wanted to avoid, but was absolutely necessary to get some nutrition in him. Gagged and vomited twice, but did drink some of bottle with it in too, so that was encouraging. new iv, infiltrated, finally just left him alone for night.
Wed: another terrible and terrifying day. Barely ate all day. Mood severly affected by tube. laid in my arms all day barely moving. Ran more blood/urine labs. Unchanged or worse results. consulted with renal docs. Finally got good iv tech to get iv in. Began PPN - peripheral in nutrition. having doubts about ng tube. Worried about demeanor (all of ours really). Vomited overnight twice due to NG.
Thurs: had less labs to do today but still very grim day. Still not eating well and I decided he wasn't gaining anything by having NG tube except being miserable. Decided to put PICC line in fri to give TPN, which can give total iv nutrition and even allow him to gain weight.
Fri: decision made to remove NG tube during PICC placement. Down to radiology in am. Got my first break when he went under general but had no appetite and no idea what to do with myself, so I got an oreo shake and walked around, then ended up falling asleep in a tiny chair in the recovery room waiting for james. All went well. Brought j back to room and he turned into a new man. playing, wagon ride, books, finally smiled. Ate better. Docs all happier. started tpn that night and got moved to a private room due to funny story with infectious disease people but we r not complaining and neither is our old roommate. finally got a couple of consecutive hrs of sleep.
Sat - today: ate better in am. still has gurgly tummy. much more interactive and playful. Clearly he's napping right now. will being working up to full calories on tpn. Going to be here for a while yet, but not sure how long. Cant wait for monday when tom can spend all day with us.
UVA has been amazing. We have a team of about 25 doctors from different specialties all working to figure out what happened. Theory looking a little more towards nutrition rather than underlying kidney or absorption issues, but not completely sure yet. James' overall attitude is so much better and I no longer burst into tears when perfect strangers politely ask how I am. We have had some wonderful friends visit and send gifts, and, most importantly, prayers. I can't thank you all enough and please keep those prayers coming! The support has meant more to us than I can properly express. Once James is fully stabilized then surgeons will place the G-tube we had originally scheduled for yesterday before all hell broke loose. I will keep updates on here and hopefully they are very very boring!