Today has been busy!
Matthew's blood was drawn around 5am this morning for a chem7 test, specifically to check his creatine level. It came back .6, which is lower than it had been (.7), but still above normal for his age (< .5). So off we went for a VCUG at 12:30pm to check for reflux from his bladder. The VCUG came back negative (no reflux). This is good and bad. Good in that, he doesn't have reflux, which he shouldn't. Bad in that, he'll probably need more tests once nephrology (sp?) sees his results. Basically, they move onto the next thing that might be wrong ... whatever that might be.
When we returned from the VCUG, the audiologist arrived to run Matthew's diagnostic ABR hearing test. This was something that we could leave the hospital without, and would do out-patient, but since we're already here. We'll post the results when we have them.
Occupational therapy came by again this morning. Matthew's attending physician, Dr. Cox, is concerned with the angle with which he holds his wrists ... looks very uncomfortable to me, but he likes it. So they would like to use tape on his arms down to his fingers to hold them in a more natural position, and get him used to extending his wrists to prevent tightness down the road. More goodness that we wouldn't be receiving if we'd gotten our wish to leave last Friday!
Feeding update: Matthew's feedings have progressed VERY well. Over the wknd, after he lost a little weight, the docs upped his feedings from 60cc to 65cc. Katie and I were very concerned because the 60 was taking forever ... 65 would be even worse, right? Wrong. Moving to a faster flowing nipple helped tremendously and Matthew's weight was up from Saturday to Sunday evenings. During rounds this morning, Dr. Cox decided with her resident, Dr. Wortham, to add formula powder to Katie's breast milk, increasing the calories from 20 to 24 per fluid ounce. More bang for the buck, basically. So instead of struggling to get 65cc into Matthew, we can cut back to 56cc. His first bottle with the "fortified" milk at noon today, Matthew finished his 56cc in 12 minutes! He hasn't needed the NG tube to finish any feeding in the last 36 hours ... we hope it will be removed soon.
We have emotionally moved from "Get us out of here now!" to "Run every last test that's necessary, then we'll leave." The lull of the wknd was difficult on us, but with Monday comes increased activity around the hospital, and more importantly around Matthew's crib. Our resolve grows, despite our bodies' fatigue.
A huge thank you to everyone who's gone above and beyond to help us through this difficult time. People have visited us here at TCH, cooked meals for us, volunteered to pick up and watch Alyssa and Jackson. I could go on and on and on. As well, thank you for all who have offered to help in anyway that they can. The distances are great, but your hearts are close.
Please keep Matthew and his care staff in your prayers. God bless each of you for your love and kindness.