Bad Blood.
I don’t mean this in the bad feelings sense. I mean literal bad blood draws, and maybe even a bad blood transfusion, all leading to quite the clusterfuck of a few days. We’ll explain. But at the outset we’ll say that Logan is now happy and doing well. Also, the thing we left off the last post with—the anticipated first scoping of the intestines on Monday—went well. The intestines looked happy, pink and intestiny (all the things the doctors get excited about). The biopsy taken from within the intestine is measured on a scale that showed “mild” rejection, but no one seems too worried about that, and it sounds within the realm of things that are expected at this stage and manageable. And they are slowly and steadily raising the volume of feeds he is getting through the GI tract following that scoping. Another scoping and biopsy is planned for tomorrow. Its common to do these weekly or twice weekly in the beginning. So lets all keep hoping for good progress on this follow up.
Now, back to these past few days. It all started Sunday. Logan’s labs showed that his hemoglobin had dropped pretty precipitously to 6.5. This type of change is a sign of significant blood loss. But we didn’t notice any bleeding. And he seemed fine. Nonetheless, given that his levels were low, the doctors gave him a blood transfusion. Around the time he was getting that he said he had a slight headache that seemed to ease up with some Tylenol. But then, late that evening, the headache came back with a fury. Becca was there with him that night, and he didn’t sleep and was at times crying through the pain. This was all very new and worrisome. By Monday morning, the headache still hadn’t abated by the time he went down for his scoping. Around this time, Logan’s Monday morningblood labs started to come back, and they were all over the place. High potassium, liver labs out of whack, everything pretty much blinking red. Becca mentioned that the way the blood was drawn in the morning made the results very iffy…the line they were drawn from became clotted and it was likely the blood had been ”hemotized” or degraded in a way that made the results unreliable. The lab itself stated as much as the results were coming in. Nonetheless, given that Logan had this newly-onset splitting headache, the doctors were still trying to make connections. Potassium is high, maybe there’s a heart issue, let’s get an EKG, etc.
Then another lab came back at a critically high level, the Tacro. I should explain a bit about Tacro. It is the main drug that Logan takes daily now, and will take into the future, that suppresses his immune system and wards against organ rejection. It is best to keep the Tacro level within a sweet spot range that is high enough to prevent rejection but low enough so as not to knock out all of the immune system. And it might be advisable to adjust the level based on certain considerations. For example, if there are signs of rejection, probable best to go up on the Tacro. But, on the other hand, if there is an infection of some sort, you want more immunity to fight the infection so less Tacro immunosuppressant may be the way to go. It is a real balancing act. Monday morning Logan’s Tacro lab came back at such a high level that it can carry severe toxicity in the brain, leading to swelling, pain and potentially seizures. Therefore, even though the labs were suspected to be faulty, there was this very high Tacro reading coinciding with the severe headache Logan had, so they were concerned that could be the trigger. Neurology was consulted, and they ordered an MRI, which would reveal if the cause of the headache was Tacro-induced or something else.
It is never easy to get this type of short-term imaging done, and the MRI seems to be the hardest to come by. They originally said there would be an opening at 7pm. Then 9pm. Then they were finally ready at around Midnight. By this point, Logan’s headache had really abated. Plus they re-drew his Tacro and other labs and everything came back within much more normal ranges. We asked if it was still necessary to do the MRI since he was finally sleeping after being awake the entire night prior. The doctors felt that it would still be helpful given that there was no clear explanation for the headache that had presented, and no one wanted to miss anything.
So that set the stage for Logan, who had been having a bad headache for much of the previous day and having not slept at all the night before, but now asleep, to get awoken and placed in an extremely loud MRI machine, without sedation, for nearly two hours, from midnight to 1:30 a.m. It was a lot for him to endure. Becca was there to try to comfort and console him in between “cycles” of the MRI imaging that sounded like a freight train derailing. That terribleness over, Logan got back to his room at about 2 a.m. But he still couldn’t sleep because laying for so long on the hard MRI platform had given him a bruise and pretty bad back pain. Second night in a row without sleep…. For Logan, and for Becca.
Come Tuesday morning, Logan’s back now started to feel better. His headache had been better since the prior afternoon. The MRI results were normal. It was all just, an unexplainable 15-hour headache. But it all had taken quite the toll. Logan was finally able to get some sleep last night, then today took a 4-hour nap in the middle of the day. He woke up from that finally seeming back to his happy self (three days after this headache saga began). Bob and Barb stayed the night at the hospital with Logan last night. Becca, for her part after also not sleeping for two night in a row, slept for 14 hours straight upon getting home.
Amongst all of this, they drew Logan’s AFP on Monday and it started to go back up. In response, the doctors ordered a chest and abdominal CT-Scan that Logan got yesterday (after getting the MRI in the middle of the night the night prior). The results didn’t show any noticeable tumors, and the AFP is low enough still that it wouldn’t be expected to correlate to any visually detectable masses. But there is a real need to start up the post-transplant chemo with the AFP starting to rise. The CT scan aided in “clearing” Logan to start chemo next week. More to follow on that.
Stopping and reflecting on the past few days is tricky. Its hard for me to know what lessons to draw, and illustrates how hard all this is. We are there with Logan every second and see little changes in him. We’re also now pretty adept at raising issues and advocating when something seems off. He had never gotten headaches before, it could be something serious. But it also went to an extreme place pretty quickly based on pretty faulty information. And Logan certainly didn’t benefit from a middle of the night MRI and second night in a row of no sleep. It would’ve been better to just let the headache subside and move on without that drama. But you only know that in retrospect. In any event, we’re glad for Logan’s smile to return, and sleep.
