So much has happened since the last post and the thought of writing an update has been a bit daunting given all the new scares and ups and downs… there hasn’t really been a moment of calm to collect our thoughts and update friends and family. We have really been taking the days one hour at a time.

It all starts last Wednesday night when Logan started to have a higher resting heart rate throughout the day that ultimately progressed into a fever of 101.5 followed that night by very low blood pressures. After about 48 hours, blood culture told us he had an infection and by 72 hours, we learned it was klebsiella. They started him on antibiotics and pulled the PICC line. Around that time, he started peeing trace amounts of blood which progressed until he was passing clots the size of quarters. We were also approaching the nadir point of the chemo cycle when our white blood counts were at their lowest to fight infection. A urine culture soon informed us that the Adeno viral load had sky rocketed and affected the lining in bladder, causing it to bleed much like we’d seen last month with his blood stools. With a platelet count of 8, his body had no ability to stop the bleeding.

So we’ve been facing a difficult battle on two fronts: Adeno virus and klebsiella bacteria. He’s been on strong antibiotics all week but despite that, he continues to spike fevers, some close to 103, and get the chills. Because of the transplant, he’s only able to get Tylenol every 6 hours. As we tested blood cultures daily, the bacteria growth was turning around quicker and quicker. The team decided to remove the port, assuming the bacteria had attached itself and was part of the reason the infection was improving. He went into IR yesterday and had his port removed and new double lumen PICC replaced. Since he had only had the port for about 4 days, we were having to stop and restart his TPN to give blood products (LOTS of platelets for the bleeding and hemoglobin to replace it). This has caused Logan’s sugars to be extremely high. So we have been working closely with endocrine in addition to infectious disease.

And in terms of the intestines and GI… everything is inflamed and we are able to avoid problems as we adjust Logan’s steroids to fight the virus and bacteria. 

It has been an exhausting week to say the least and Logan’s endured even more than usual. The only silver lining I can see right now is that the AFP dropped from 1200 to 375 this week so the chemo is effective at that. He’s starting to lose patches of hair and his neutrophils are non-existent. Praying that his counts bounce back up soon and we can eliminate the infection before things get even worse. 

Ah! And one VERY positive thing that has brought us lots of joy and comfort… Uncle Jon, Aunt Tina and cousin Jaxon arrived on Sunday from San Diego and are staying with us for almost two weeks as Mimi and Papa returned to Hawaii to tend to things at home. They are planning to be back in time to celebrate the twins’ 9th birthday on May 13.

There are probably at least 5 other health related things that I’m not mentioning that have been topics of discussion but I think this is enough for you all to process for now.

Pray for us.