lab insanity and birthday joys

***UPDATE AT BOTTOM***

Boy, have we had a roller coaster ride the last couple of days! I hadn't blogged because things kept changing quickly - as soon as I grabbed a minute to blog, things changed.

Noah had his routine labs on Tuesday. We got the results on Wednesday - his platelets were down, both liver enzymes were up, and his blood sugar was in the 50's. The platelet/liver combination was scary - his liver has held strong for almost 4 years on TPN, but the specter of liver damage is never too far from our thoughts. The low blood sugar was, well, just plain confusing. He has a huge glucose load in his TPN and he's getting a liter and a half of D51/2 (sugar water) running around the clock. If anything, we should be worried about HIGH blood sugar.

The nurse called Dr. B, and he called us. He asked me if there was any chance that Noah was sick (viral illnesses can affect liver numbers sometimes). I assured him that Noah looked perfectly healthy. Of course, as soon as I hung up the phone I went to check on Noah and realized that he felt warm. He had a very, very low-grade fever and I was actually relieved - maybe he WAS sick after all.

Since Noah didn't really look sick at all, we decided to have Noah's nurse re-draw labs first thing the next morning (yesterday morning) and take Noah to see Dr. B as soon as the labs were drawn. As soon as we firmed up these plans, Noah's low-grade fever went away, never to reappear.

The next morning he still looked fine, and Dr. B agreed that he just wasn't sick. The plan was to stop his Keppra since it was the only other thing (other than TPN-induced liver disease) that would cause his numbers to jump so high. It was a long shot, as Keppra isn't really very liver-toxic, but it was the only thing left to eliminate. The lab was taking forever with Noah's lab results, so we finally left Dr. B's office with his promise to call us when the lab results came back.

I stared at my phone all day, wishing it would ring. For better or for worse, I wanted to know what was going on. The results finally came in later in the day yesterday - his platelets were still low, but they were higher. His liver enzymes were still high, but they were much lower. The fact that he was trending better is very encouraging, so we aren't going to take action right now. We have NO idea what made his liver do this. The labs were drawn Tuesday morning, and that teensy little fever didn't happen until Wednesday afternoon. If he'd been sick enough to mess up his liver, we should have seen something. All in all, we're thrilled that the numbers are better, but a little uneasy that we don't know why they went up in the first place. I'm choosing not to dwell on the "why," but to focus on how deeply thankful I am that the Lord is continuing to protect that little liver of his!

The blood sugar, on the other hand, is still low. It was drawn off his central line again when his labs were repeated Thursday, and I've been able to spot check with my glucometer. The very highest reading we've gotten is 77. Again, we have NO idea why or how his blood sugar is so low. We already knew that he was really burning through calories/sugar - he hasn't gained any weight in over a year, but never expected him to burn through the D5 like that! Dr. B's plan is to increase the 5% dextrose to 7.5% or 10% to see if more sugar brings his blood sugar up. He needs to consult with Gi and Dr. Kinsman, so it will be early next week before we make any changes. In the meantime, we just need to keep an eyes open for any warning signs that his blood sugar is getting dangerously low.

In other Noah news, we have a birthday next week!! Noah is so, so, so excited and can hardly wait to turn 5. His birthday is Wednesday (the 10th). Our family tradition is for me to cook whatever dinner the birthday person chooses, then the whole family gets together for dinner and dessert. None of us can stomach the idea of eating a meal together on his birthday, so we're all just going to have dinners at our own homes then get together for an ice cream "cake" and presents after dinner.

Saturday (the 13th) is his big Octopus Party with his friends. Again, he is SUPER excited about this. I ran into an old friend the other day (well, she's not old, but we've known each other a long time) and when she heard about his party, she contacted our local arts center. Next thing we knew, they had donated the use of their party room/classroom for the party! Noah is thrilled at the idea of getting to go somewhere new for his party, and I'm tickled pink myself. His big plan was for us to take everything out of the playroom and turn the playroom into the ocean. Of course, I was willing to do it, but I wasn't looking forward to moving everything out, having a party, then moving everything BACK! The arts center is letting us decorate just as we would if we were home, so we get all of the fun with far less hassle. :-) We're going to go over Friday afternoon to decorate so he'll be surprised when he arrives on Saturday morning.

Noah's birthdays are always very emotionally charged for me - there is the sweet, deep, joyful victory of knowing that he fought for another year, but there is also always a shadow of sadness as well. I am so glad to say that this year there has been much more of the joy and less of the sorrow. Even though he is much sicker than he was last year at this time, he is hurting less and we have more hope of ways to keep him feeling better. I'm taking my cues from him - he is so sweetly happy and hopeful and strong, so I'm choosing to spend these days that way also. He isn't thinking about the future or wondering what this year will bring, nor is he sad over all that's been lost over the last year. He's just bubbling over with excitement over all of the good things that are happening NOW. It's a great way to live, and once again I'm thankful to him for showing me the way.

Blessings,
Kate

P.S. - We have a hem/onc appointment early Monday morning (8:30 - unpleasantly early, but early enough to infuse or tranfuse Noah if needed). If I don't update before then, I'll update after. Noah's hemoglobin has been holding its own pretty well in spite of the platelet swings, so we might get away without needing any intervention this time. The important thing is just to be sure that he is as tanked up and optimized as possible in time for his big day!

UPDATE - Just as I finished typing this, a courier came to the door with a cooler full of 71/2% dextrose bags. Guess Dr. B got in touch with whoever he needed to contact, and decided to up the dextrose now rather than waiting until after the weekend. We'll be hooking up the new D71/2 in a few minutes -eager to see if that helps his blood sugar.