Ongoing low grade fever

Unfortunately our little guy continues to have his weird low grade fever. He has had it for a little over a week, with a two day break. The Doctors are somewhat clueless about what is going on, but all agree that they do not like to see this pattern.

Since Loki was discharged from the hospital we have seen many doctors and nurses, lots of trips to hospitals and several pokes and prods.

Just to give you an idea of the last two weeks:
*Monday the 10th (if I remember correctly) we saw Dr. Abbott in his office and OT Heather for feeding therapy at our home.
*Tuesday the 11th we spent approximately 6 hours total to get to UCSF hospital and have a MAG3 Scan (still no results as we need to visit the urologist to know if and what they found). This scan by the way, was absolutely awful. Loki was strapped to a bed with sand bags next to him and a bunch of blankets wrapped around him. Then tape was strapped around him and the blankets so he could not move. Only one arms was free to use, because the other arm had an IV (which took a while and several pokes to put in). He was laying down and crying continuously for almost 1.5 hour. Very, very sad little boy. I read books, sang songs, stroked his head and gave kisses. Nothing could comfort our little guy.
*Thursday Home Health nurse Elizabeth, who lived in the Netherlands for five years, came to check in on Loki.
*Friday Loki had cranial sacral therapy at home, in the evening the fever was first noted.
*Saturday we saw Dr. Vo at our pediatrician's office.
*On Monday we saw Dr. Vo again because of the fever and she sent us to Children's Hospital Oakland for X-rays of his chest and abdomen. Besides the feeding tube being in too far and minor upper respiratory congestion nothing came up. No explanation of the low grade fever.
*Tuesday family visit from Uncle Jan and his family. No Doctors, yeah!
*Wednesday we had early intervention from Barbara cut short for yet another Doctors visit. Still fever, still no clear explanation. We were sent to Children's Hospital again to get blood work done. Urine checked as well, it looked clear. The nurse, although friendly, was rough and Loki ended up with a half draw on the left, big bruises and a full tube of blood via the left arm. The only significant outcome? Bicarbonate of 3o. Normal range is usually 20-28, however this depends on which test is used. Nobody is too concerned, yet a little confused. This could indicate that the kidney is not processing perfectly well, but no worries they say. Another draw in a few weeks to follow progress.
*Thursday GI visit with Dr. Rhee at UCSF. She has no idea about the low grade fever, which seemed to be gone for the day, despite a somewhat high baseline temperature. She wants a stool sample as I (mom) noticed somewhat odd white curds in Loki's stool. Seriously, how many parents out there extensively explore their child's urine and stool? Fortunately more than once it has gotten Loki the help he needed rather fast.
*Friday, mom had Doctors visit, blood draw etc. just to have a standard check of her one kidney (per advice of Loki's nephrologist. Just once a year to be sure all is well.) Stopped by Pediatrician's office to get jars for stool samples. In the evening OT for Loki and lucky enough, a break for mom and dad. Loki's wonderful OT had offered to babysit our little guy so we could go out for Sushi and a soak in the hot tub at Piedmont Springs, Very nice to drop parenting duties for a few hours. Heather is yet another angel in our lives and Loki loves her. He is very smiley with her, and when being held he nestles himself in her arms. Very, very cute.
*Saturday Loki pooped, yahoo. Scooped stool in two jars from the diaper. WOW.... never read poop scooper was part of job description motherhood! Drive to Berkeley to drop off poop at lab.

That's where we are at today.... Loki's low grade fever is back... pfff. We know we will see the Doctor again upcoming week as it is not normal for a baby to have a fever more than a few days, without something brewing in the background. The little guy is in a good mood though and playing happily with his maracas trying to bang them together or taking his shapes out of a jar.

Everyday I spend at least 30 minutes, and sometimes up to 1.5 hr. on the phone with Doctors, therapists and nurses to either set up appointments, discuss progress or lack there off and share info shared by the other providers with me, but which they do not necessarily share with one another. In addition Loki pulls his tube partially out frequently and completely out every three days or so. We're so much quicker and much more comfortable putting it back in though.

It is quite a lot, juggling all these different doctors and service providers with their sometimes bureaucratic offices and telephone lines. Nevertheless, when I woke up this morning I felt so blessed with Loki in my life and dad as such a wonderful husband and dad to Loki. I realized how much more complete I feel having Loki join us in this crazy world. Despite all his procedures and medical appointments he is so happy and easy going. He babbles, laughs, plays and cuddles most of the time. Cries very little and treats us with the sweetest giggles when we kiss his tummy or neck. In the end that makes the medical treadmill bearable. This wondrous, curious, handsome and sweet little man of ours!