From Julian's COTA journal.
It's 12:15 am on Thursday, and I couldn't sleep so I thought I'd add an entry in Julian's COTA Journal. He had a fantastic night last night, day today, and is sleeping soundly as I type. His creatinine crept up to 0.4 today, which is a bit of a concern to the Docs as it was 0.2 within 24 hours of transplant. There are several reasons it could be a little higher, a few of which they explored today ie obstruction (they did an ultrasound with doppler and found no obstruction), a leak, which is unlikely because we did test the drainage fluid the other day before taking out the drain and it was negative for urine, and there are 5 other reasons, only 1 of which is a super-bad reason, and that would be acute rejection of the organ. We're praying it's not that. Please pray with us that it is only natural variations. 0.4 is still well within the 0.3-0.6 "normal" range, but they are playing it safe and retesting his creatinine on a regular basis to try to spot the trends and stay ahead of acute or chronic rejection if it presents itself at all.
Meanwhile, we wait. Discharge is set for Friday (I guess that would be tomorrow, technically!) and I'm very thankful that Dave is flying in tonight, albeit quite late, to assist in the discharge process. Anything could delay the discharge through the weekend, but I'm hoping it is just as simple as training us on a few things (like medicine administration and nasal-gastral tube feeding with the machine) and letting us go. Julian is being discharged with his urine tube still intact, attached to a stint in his kidney. He will drain into a bucket of sorts, so we can continue to measure his output, and in about 3 weeks they will surgically remove the tube and stint, along with his hemodialysis port. Lord Willing.
His immune system is pretty shot, and they are discontinuing the antibiotics that have been "covering" him for the last week, so also pray that we can keep him germ free while they get his immune-suppression levels stablized so as not to be too high or too low. They want him to be able to fight infections without his body fighting the new kidney (rejection).
In all, the Lord is indeed in control. I was having a bit of an anxiety attack a few days ago (the day Dave sent me over to the Ronald McDonald House for a hot bath and a nap) and it was during that bath that I had a chance to stop and think about why I was beginning to "lose it" anxiety-wise. It's been quite a 6 months for us, with many changes, and I was contemplating these things as I was contemplating how the Lord has continued to provide for us in each and every circumstance. I decided that it was fear of the unknown that I am most afraid of, fear of the unknown that causes the anxiety. I'm Irish. My husband says I have the temperment of an Irish Horse. You see, horses have the natural disposition of thinking that anything coming into their corral is going to eat them. They naturally think "worst case scenario". Irish people tend to do that as well. Don't ask me why, but you show me an Irishman and I'll show you someone who looks for the cloud in every silver lining. I think I inherited that tendency through my mom, because my dad is just a chronic optimist. I seem to oscillate between chronic optimism and Irish Horse.
Anyway, I digress. The point of my sharing this is that it occurred to me during my "chill bath" that we are not to focus on the unknowns, but we are to focus on the One Known. The One Known being our Lord Jesus Christ. There is no such thing as an unknown factor to Him. Therefore, He's got it covered. Every circumstance. He knows and He cares and He loves us. I always come back to the bottom line that He loves Julian more than I ever could, and that's saying something! And He will never allow anything into Julian's life that is not in Julian's best interests. Kidney failure? How can that be in Julian's best interests? He's 3 for goodness sakes. Well, I can't explain it. And I would never wish it on anyone. But it's not up to me. It IS up to me to be Julian's Mommy and to take care of him and to love him and be by his side. I can't explain to Julian that the hurt he is feeling now is actually healing him. I can't make him understand that I would do anything, ANYTHING to be the one on that table instead of him. If I could take his place, I would in less than a heartbeat.
Then I have an "ah-ha" moment and see that through Julian's life so far, I am actually beginning to understand what kind of love Christ had for us when he climbed up on that table for us. When He took our burdens and our infirmities and our sins upon himself, the weight of the whole world, and sacrificed himself for us. He took our place. And we have been "transplanted" into his kingdom through that loving sacrifice He made over 2000 years ago.
Time for bed. Goodnight, y'all.