Hope everyone has a fun but safe New Year’s Eve!  We are all celebrating that Levi was able to get off of the ventilator today - a great way to end 2020!  He’s tired but hopefully will continue to improve steadily over the next few days.  We are so thrilled with his progress and so thankful for the support as his journey continues.   [...]

Levi is making small improvements day by day.  He is still on the breathing machine but there is hope that he will be able to have this removed in the next couple of days.  The infection seems to be controlled at this time with ongoing antibiotics and the return of his white blood cells.  Hooray!!!  We are still waiting for his red blood cells and platelets to follow suit, but it is normal for those to lag behind.  
Today they were able to wean down some of his sedating medications and for the first time in 11 days he was able to communicate with us by shaking his head yes or no.  It comes as no surprise that it all goes back to Blaze...when asked about which tv show he wanted to watch - Daniel Tiger and Paw Patrol were firm no’s...but Blaze got a pause and then a definite head shake “Yes!”   That’s our little amazing Levi! [...]

Levi is now ten days out from his transplant.   And for most of those days, we could all agree that it has been a terrible, horrible, no good, very bad day (yes, we love children’s book references).  He remains in the ICU and on the breathing machine for now.  He has had many challenges in this short amount of time requiring antibiotics, antifungals, medication to support his heart’s hard work, blood transfusions, platelets, and medicine for pain.  But...yesterday we got the first signs that his transplant may finally be taking hold which for him will be his path to recovery.  That combined with Beth and Zack’s tireless support of him, holding hands, reading stories, and staying by his side means that today is a little less terrible.  [...]

Levi wants to wish everyone a Very Merry Christmas! 

He's still heavily sedated but his blood pressure is better and the antibiotics and antifungals are fighting off the infection.[...]

          [...]

Levi remains in the ICU but there have not been any big changes which is positive.  We are still waiting on some additional tests but most of the updates we have received have been encouraging.  They were able to get out his PICC line which was contributing to his infection.  He continues to need extra support and seeing all of the lines and tubes he is connected to is hard, but he somehow still manages to steal the show with his cuteness!  And, we had to laugh at the fact that he is now wearing yet another pair of boots.  But we don’t think he likes these moon boots as much as his monster boots so we’re hoping to switch him back soon.  
If things continue to remain stable, they might try to get him off of the breathing machine as soon as tomorrow.  We are certainly excited for that whenever he is ready as that would be another step in the right direction for our Amazing Levi![...]

Levi remains in the ICU as he continues to need extra support.  He is still intubated and on the breathing machine for now to give his body rest.  He is able to “breathe over” the ventilator meaning that there is a good chance we can start to wean down that support soon.  They were able to locate the organism causing his infection which is great news to allow the medication to be specifically targeted toward that bug.  Even better news is that the infection did not spread to the shunt that helps to reduce pressure on his brain.  Phew!  He’s had enough of those surgeries!  For now, he is on medication to allow him to rest despite the machines.  Beth and Zack were also able to get a little rest today and for that, we are thankful as rumor has it that 2 hours over four days is not quite enough.   [...]

Levi has definitely had a rough time and unfortunately has now been sent back to the ICU.  At this time, they have identified an infection in one of his lines.  Because his white blood cells are zero due to his treatment, he will need a lot of support as his body cannot fight the infection right now.  Due to the effects of the infection, he has also now been placed back on the ventilator/breathing machine to allow his body to rest as it was working very hard to keep up with the changes.  He will also be getting an mri of his brain and a CT of his abdomen as there are several other signs of illness and we need to rule out all of the possibilities to provide him with the most support.  We are putting our confidence in his care team to get him what he needs and even though we hate that he’s there, we are finding a little bit of comfort that two of his doctors tonight have seen him through many other tough nights in the ICU.  At least they all know how Amazing he truly is![...]

It's a big day for our boy -- Transplant Day!  Today Levi started getting stem cells, which means help is on the way! It will take a bit for them to start working, but little by little he'll start feeling better and we'll start seeing his sweet personality again. Of course, Beth and Zack are both exhausted but are relieved to be on to this part of the process. [...]

It has been a few very hard days for our brave and Amazing Levi.  He is now finished with all of the chemo and has today to rest before transplant tomorrow.  He’s tired, he hurts and there’s still a long road ahead, but at least he’s on to the next step.  Rest well today, little Buddy...[...]