A Bump in the Road
Hello to you all.
We have had a busy time these last few days, much has been going on. I will hit on some of the more significant items in this post.
Though Xavier is doing well, he has had a little set back. The low-flow air was not enough for him. Though the air and oxygen are not a problem, he still needs the added pressure of the high-flow air to help stimulate his breathing. Less than a day after transitioning to low-flow, he was returned to high-flow at a 2 liter/minute level. It is unclear at this time whether his need to return to the high-flow is due to Xavier's underdeveloped neurological system or coincidental with the onset of a low grade infection.
On Thursday a purple color showed across his belly, starting out as a large spot above his belly button and below his rib cage. He grew quiet and lethargic (which led to raising his high-flow from 1 liter/minute to the current 2 l/m) over the next day. The doctors took blood, urine and some cerebral-spinal fluid (through a procedure called a lumbar puncture) and ran several tests, including some cultures. Though most of the labs are returning negative, there is a low-grade bacterial infection in his blood. We will not know about his CSF cultures until Monday or Tuesday, but we expect them to come back negative, so meningitis is not likely.
Xavier is off his milk feed and back on his IV drip via his PICC line. The PICC line is also being used to deliver antibiotics. It was expected his PICC line would be removed in the next few days with antibiotic treatments continuing orally. It was scheduled to come out Friday evening or Saturday morning, but that did not happen because of all this goings on. Because the PICC line feeds close to Xavier's heart, it makes the tubing an easy highway for bacteria to spread through his little body very quickly. It was ruled out this morning that the PICC line was a a source of colonization for bacteria. The line stays in for the next few days, perhaps to the end of his antibiotic treatments.
The antibiotics have helped his strength return a little and he is doing better. Still another issue has come up. He needed a blood transfusion (about 15 ml). The reason for this is all of the extra blood draws for his recent labs trying to diagnose his illness has left him anemic, his red cell count at 26%. His infection has also contributed to this. Normal counts for babies his size should be in the 32% to 52% range. This is impacting Xavier's ability to carry oxygen efficiently and hampering his nutrient supply and his ability to fight off the infection.
This low count is hampering him from good oxygen flow in his body. The antibiotic regimen will eventually stave the problem of the infection, but the primary anemic issue is most probably due to the increased blood draws (he needs one every day so long as he is on the drip feed because they doctors need to tailor every day's drip concoction with what his body needs, which changes day by day).
Some positive news:
- His weight is 845 grams (1 pound 13.8 ounces). He put on 55 grams in one day, and since yesterday another 45 grams. Some of this weight will be water retention, but still a good trend.
- He has (or was just going to) achieve a full 8 ml of milk every two hours, which is exactly what he should be ingesting. To be fully at 8 ml in his feed will mean stopping of the IV feed and removal of the PICC line. Because of his infection, however, he is still getting his food via the PICC line. The doctors may start him with 1 ml of milk orally later tonight.
- He has grown 3 mm in length last week, bringing him to 33.8 cm in overall length. His birth length was 33.5 cm.
Always, thank you for your prayers. They will lift Xavier up on wings, like eagles!
A self-portrait of mom with nestled baby.
A happy Dad holding little sleeping Xavier. Little does the little tyke know, but he will get a blood transfusion twelve hours from this time.
Inspecting his son, Dad obsesses over the fit of Xavier's newly-changed diaper, but most importantly, Dad lovingly admires his boy!
Dad holding Xavier after a diaper change. He's a little cranky at the end of his care times. The nurses measure, and jostle and listen to his internals, change his bedding and swaddle. What's a little man got to do to get some sleep around here?