Friday, December 17, 2004, 10 am MST

Greetings from the Phillips household! Julian has been home now for exactly 3 weeks, and we are rejoicing constantly! First the medical update: Julian had his follow-up appointments with his urologist and nephrologists on Wednesday and Thursday of this week, respectively. The Urologist said, after looking at his ultrasound, that his left kidney, which previously looked like just a sack of cysts and totally non-functional, appears now to have some good kidney “meat” as they say. It is still primarily cystic, but the Doctor said that because the kidney has been “decompressed” now for 9 weeks, there appears to be some possible function there. (Decompressed meaning that there is not undue back pressure being applied from the previously overextended bladder) What an answer to prayer, can I just tell you? I have always prayed for kidney function from BOTH kidneys, even when we were told that the left one was basically dead tissue.

“But if You can do anything, take pity on us and help us!” And Jesus said to him, “’If You can!’ All things are possible to him who believes.” Immediately the boy’s father cried out and began saying, “I do believe; help my unbelief.” Mark 9:22b-24

“And Jesus answered saying to them, “Have faith in God. Truly I say to you, whoever says to this mountain, ‘Be taken up and cast into the sea,’ and does not doubt in his heart, but believes that what he says is going to happen, it shall be granted him. Therefore I say to you, all things for which you pray and ask, believe that you have received them, and they shall be granted you.” Matt 11:22-24

There is also a verse, and I can’t find it right now, which says that God will heal to the extent to which you ask. So I believe that since I have asked Him for full healing/function in BOTH kidneys, despite the medical “odds” against that happening, the Lord has been pleased to begin to grant my request. I am amazed and humbled at His goodness and mercy.

So, that is the update on the left kidney, and the increased function in general in both kidneys is being indicated by the fact that his creatinine dropped from 2.5 two weeks ago to 2.3 last week and all the way to 2.1 yesterday. Praise Him!

The urologist is still convinced Julian will need a kidney transplant at some point in his life. I am not convinced. If Julian’s creatinine continues to drop like this, and it gets to be within normal range, I fully believe it could continue to function at that level for the rest of his life. I am holding out hope for that.

Meanwhile, Julian’s hematocrit is still lower than the kidney doctor would like, so he has re-instated his Epogen injections, but only once a week instead of 3X/week. I’m hoping his home health nurse comes today, so SHE can give it to him. I know that babies begin to fear those individuals who give them shots, so I’d rather him fear her than me! Also, he is going in on Monday to his Pediatrician to get up to date on the immunizations that he has missed so far. They did discontinue his blood pressure medication, partly due to the fact that Dave and I had not been shaking his Amlodipine bottle properly so all of the active ingredients settled at the bottom and he basically wasn’t getting it anyway. His blood pressure on Monday, with no medication, was 71/45 which is pretty good for someone who was previously hypertensive. So, all things considered, the kidney doctor “formally” took him off his high blood pressure medication.

What now? He will have weekly labs for awhile longer, until the Kidney doctor decides that he can go to monthly or even quarterly labs. He has a follow-up appointment in a month with the kidney doctor, and in four months he’ll have an ultrasound and follow-up appointment with his urologist, until he can have bladder re-construction surgery.

Meanwhile, monthly “normal-baby-stuff” appointments with his pediatrician. He is not on any “real” meds except the occasional Epogen. He does have three dietary supplements to continue to help him keep his electrolytes in balance, and to grow. These are folic acid (growth), sodium citrate (sodium balance), and calcium carbonate (to help keep phosphorus in control).

Julian’s lungs are doing great, he is still on his oxygen but only a small amount (same as at the end in the hospital…..05 cc’s or 1/16th of a Liter low flow). Dave and I are sleeping at night as much as “normal” parents would sleep with a baby who is hungry several times a night. We have a Pulse-Oximeter on loan to us from a medical supply sales rep, and it allows us to not have to worry all the time whether or not Julian has managed to get his oxygen cannula out of his nose, which he is want to do on occasion. The meter is the same as the kind in the hospital, it has a little red glowing probe that is taped to the foot and it measures the level of oxygen present in the blood. We hook him up to it at night so that if he gets it out of his nose and his blood oxygen saturation level drops as a consequence to anything lower than 88 the alarm will go off and we can put it back in his nose. Generally, Julian stays between 94 and 100 with his current oxygen flow. That’s really where he needs to be for growth. Dave and I gave him another “room-air challenge” the other day, and he managed to go for 2 whole hours in the 90’s. (90% or above). After two hours he dropped to 88-89, so we stopped the challenge. We will do this once a week or so to see how his lungs are improving and continuing to heal.

Normal baby stuff is so awesome! Dave and I absolutely LOVE being parents to this little guy. He has gained some weight, and is now about 9 pounds 3 oz. What a cutie! His cheeks are getting even bigger, if you can believe it. It’s all good.

Stacy