Sunday, February 6, 2005, 8 pm MST

“Finally! An Update!” Yes, we are thrilled that Julian is doing so well. Julian has been off of oxygen support now since January 8th, with zero setbacks. That is so amazing, as Dave and I were worried when viewing the mandatory “Home Oxygen” video at the hospital, because on the video they were saying that sometimes it can be “years” that a child requires oxygen support. We are so thankful to the Lord that He saw fit to heal Julian’s lungs completely within 3 months of his birth. Thank you Lord! He actually saturates between 98 and 100% at night during sleep, which is technically when he should be at his lowest point. Not so with little guy!

We have posted some fun pictures of Julian without his nasal cannula. My personal favorite is the one in his red “hoodie” sweatshirt. What an expression!

As far as his kidneys are concerned, when last we went in to see the Nephrologist, we learned a formula to determine “kidney clearance” (see previous update) which showed us that Julian’s kidney’s were functioning at around 10.5% clearance. The number they like to start dialysis at is 10% or less. This was with a creatinine level of 2.3 and a length of 54 cm. We have learned since that Julian has been in a state of semi-dehydration probably since he came home from the hospital. The Nephrologist said that he will probably always run on the “dry” side because his kidneys just produce too much urine. I think that is why his creatinine was inching up from 2.1 at it’s lowest, to 2.2, then to 2.3 and 2.3 again the day we saw the Nephrologist last.

We realized that his dehydrated state had gone from mild to severe last week when he began to run a fever, and he lost his appetite and began throwing up in the morning after his first feed. We didn’t know he was dehydrated, but my sister said to look at his fontanel, which is the soft spot on the front of his head, and see if it was depressed at all, if we could see the ridges. We could, so I gave him an ounce of water right away which he sucked down as fast as he could. The day before we had gotten labs, but hadn’t gotten the results back yet so I called his kidney nurse and told her that I thought Julian was severely dehydrated when the labs were taken, and if any numbers come up wacky that was probably why. She called me back later in the day and said, in fact, his creatinine HAD come back at a whopping 3.3 and they wanted him re-tested as soon as I thought he was properly hydrated. That was last week Thursday. We spent Thursday, Friday, Saturday and Sunday forcing the fluids which wasn’t hard because he was so thirsty! We had to be careful with the pedialyte, though, and use it sparingly because of it’s potassium content. However, neither could we give him too much water because it may flush out too much of his sodium! I am SO glad God prepared me for this little guy by my getting a bachelor’s degree in Human Nutrition! I so needed that knowledge. We were successful and “re-hydrating” him, and in fact he shows no signs of even mild de-hydration anymore.

His appetite has fully returned, and his creatinine was down to 2.2 last Monday. His weight was up to 10 lbs 15 ounces on Wednesday, which is up 13 ounces from 10 days before. (he was 10 lbs 2 oz in his dehydrated state!) I’m hoping that his creatinine will be below 2.0 on the next testing, which won’t be until February 16th. The kidney doctor feels we don’t need weekly labs anymore, so he set them at every 2-3 weeks! He feels eventually we may only need labs every month or even every 3 months sometime soon! Yeah!

What does this mean? Well, if Julian can continue to gain weight and grow in length, ie “thrive”, and his kidney function miraculously gets to “normal”, he won’t ever need dialysis or a transplant unless his kidneys fail at some point later in life. If Julian can continue to gain weight and grow in length but keeps the same or just slightly better kidney function that he has presently, he will not need dialysis but WILL be a candidate for a kidney transplant when he hits 30-40 pounds. If he doesn’t grow and thrive he’ll need dialysis AND a kidney transplant. Does that all make sense? Dave and I are still praying for the first option, a miraculous recovery of his kidneys which will astound all the doctors, even his Kidney doctor who is a Christian. (We love Julian’s kidney doctor, he was assigned to Julian in the hospital and we have requested him since. We trust his judgment implicitly! He is a very capable and brilliant man.)

Julian had his first “store run” yesterday, and his second one today. They were both to Costco! (His Aunt and Uncle Janet and Larry would be proud!) Why two runs to Costco in two days? Well, his appetite has increased dramatically now that his parents are on top of keeping him hydrated, and therefore so have his diaper changes. This morning he “blew out” THREE onesies in a row, and since I only have 5 that I really like to use, I needed some more to put into the rotation. They sell them at Costco.

He did fantastically at the store! However, I was feeding him in the food court area, and was petrified when a 6 or 7 year old girl walked by and coughed a very suspicious croup-like barky seal cough. I thought “for goodness sakes, the first day I have him in public and he might catch the croup?! Unbelievable! Why do people take their sick kids to Costco?” I don’t see any signs of it, though, so I think we and he are alright. Here’s hopin’!

Julian’s next kidney appointment is on the 17th of February. His 4 month vaccinations are on the 13th of February. He has his next labs on the 16th of February, so he will get lots and lots of sticks that week! Poor little buddy.

Dave and I are actually considering sometime in April going on a date, to the U2 concert! It will be the first time we have left him with anyone other than ourselves, but he’ll be 6 months at that point and Dave and I will be very ready to have a date!

Thanks for praying, I’ll update you again after his appointments. Happy valentine’s day!

Until next time,

Stacy