Greetings everyone! This month, we celebrated 6 months with Julian, and overall he continues to do well! Thank you for your prayers. He is a happy baby, and his belly-laughs keep us all in smiles! He seems to carry all of his weight in his cheeks! To look at his picture he looks like a football player with no neck, but actually he is still in the 1-5th percentile weight-wise for his age. He is up to 12 ½ lbs now, and we are praying that he can catch up a bit and grow well.
We had a breakthrough on Thursday, April 14, which was shocking, worrying, and reassuring at the same time! His Nephrology (i.e. kidney) appointment, originally scheduled for April 14, was supposed to be rescheduled for the April 21. At the last minute we found out that the Nephrology clinic never made the rescheduled the appointment, in spite of the fact that I had called in March to make the change. I could only assume that there was some reason why God wanted us to go that week instead of the next. I had asked God for a breakthrough earlier that week, sobbing in my car and at my wits end as to why he would not eat any more than he was… and God answered my prayer yet again.
On this particular day (I’ll get to the actual appointment in a minute), we were having Julian’s folic acid prescription refilled. As it turns out, a pharmacist from “downstairs” just “happened” to be working in the outpatient pharmacy on the main level (instead of strictly filling in-hospital orders). The pharmacist looked at the dose and said “This seems like an awful big dose for a little guy…” so he called the Kidney Center and to make a long story short, since December 13th he has been getting 50 times as much folic acid as he was supposed to be getting! One of the practitioners at the Kidney Center did not read the complete text of the computer entry for folic acid, where there are two choices when selecting the concentration of the folic acid for a prescription, and clicked on the first oral solution of 5 mg/ml instead of the second oral solution of 100 micrograms/ml. He has been getting 2 ml’s of this solution every day since December 13th. This means Julian has been getting 10 milligrams of folic acid instead of 200 micrograms.
Studies have shown that adults start showing signs of folic acid toxicity at 1.5 milligram doses per day, and Julian was getting 10 milligrams per day. 10 mg of folic acid is 153 times the RDA for infants 0-6 months. It would be as if a 150 lb adult got 333 milligrams of folic acid per day. That is almost 12 ounces. Three quarters of a pound. Per day. Think about how you’d feel. I looked up the symptoms for folic acid toxicity (i.e. too much folic acid) and they are: Rash (check), Itchy Skin (check), Nausea (check), Loss of Appetite (check), Flatulence (check), Abdominal Distention (check). Prolonged mega-doses over a period of time may cause Folacin Crystals to form in the kidneys, which could lead to permanent kidney damage! Great, just what we would need! And nobody caught it for 4 months. No wonder he had no appetite and stopped gaining weight! He had gained as much as he could on 20-21 oz of milk per day, since he couldn’t stomach to eat any more than that.
I demanded a plasma folic acid test the very next day, which ended up being 36 hours after his last incorrect dose. I called the outpatient lab in the hospital to verify that such a test was available, and then called the Kidney Center to have orders drawn up and faxed to the lab for the test. When I called the Kidney Center, a doctor tried to tell me that the hospital didn’t do that test. When I corrected him, he indicated that the test didn’t show up on his computer. These computers, I swear… The same doctor assured me that folic acid is a water soluble vitamin, and that “anything the body doesn’t need, it just get rid of.” Yes, I reminded him, but the excess is cleared by the kidneys. Not good, considering Julian is a kidney patient in the first place.
Now, normal folic acid levels in the blood are anything over 5.6. There is no upper limit, but they stop measuring at 24. Julian’s plasma folic acid came back at “GT 24” on Friday AND Monday. “GT” means “Greater Than.” Doctor Ford said that Julian’s folic acid level is literally off the chart. They don’t have the instrumentation to measure how high Julian’s actual level was. There is also no documented research showing what this kind of mega-dose will do to a patient over time. This is very disturbing, because his appetite won’t return until the level reaches more of a normal level, and since folic acid is cleared by the kidneys, we don’t know how long that will be. Theoretically, this has affected his 3 month and his 6 month growth spurts. So, we have had Julian off of folic acid completely since April 14th. Immediately upon taking him off, his skin rash started to go away and his skin became much more supple. He lost a lot of water which he was retaining in his arms. Although his appetite has not increased, he is not nauseous anymore. We’re hopeful that this was caught in time, but we’re worried for Julian’s future as well.
Whew! A lot to process. Please pray that Julian recovers and that he doesn’t suffer any permanent damage to his kidneys.
On an up note, while we were at the Kidney Center for his Nephrology appointment, they went over his labs from that day with us. The dietician said “His creatinine is 1.7”. Dave and I both said “WHAT?!!” Yes, his creatinine has gone down. Subsequent lab results have indicated that this is a stable reading, even after taking him off the folic acid. This means his kidney function is up to about 16% now. Overall they say he is doing great, and is continuing to astound them all.
On May 26th Julian will have the bladder surgery to fix his posterior urethral valves. This will effectively “flip the switch” so to speak, opening up his urethral valve and closing his vasecostomy. He’ll be admitted the morning of Thursday May 26th, get an ultrasound, have the surgery that day, stay overnight and have another ultrasound the next morning to make sure his bladder is draining and operating as it should. Please please keep us all in your prayers for that time, as it will require anesthesia and IV’s and all that again, and I think it will be difficult on all of us.
Meanwhile, on the Dave and Stacy front, I (Stacy) am enjoying being a full-time mom, and Dave just began a position as an Intern-Architect at a firm in Longmont. This job is a gift from God, as we were at the end of the rope in terms of our resources. God keeps us relying on Him at all fronts! With the help/advice of some very kind people who helped Dave with his resume, he was able to line up about 6 interviews in Denver, Boulder and Longmont, and ended up taking a position in Longmont. He will be working toward his registration which should take one or two years, and is excited about learning all angles of the business.
Well, that is about all! We’ll update the site when there is something new to report, probably toward the end of May. Thanks again for all your prayers. To think of all that has happened in the last six months is mind-boggling. God is good and that is a fact.
Until next time,
Stacy