Today Lincoln is spending a few hours in the hospital getting an IVIG infusion. He’s been low in IgG before, but that was related to his chylous leak after a lymph node was irritated during his transplant surgery. Now, they think his body is playing catch up, plus he’s on immunosuppressants. They are not concerned with this long term. He’s tolerated that infusion well before, so we’re hoping he does this one well too. However, there is still a chance he has some kind of reaction to the process.

Lincoln has been doing so well and no longer needs an ultrasound to get blood work! This has made our hospital visits so much easier and spared Lincoln from unnecessary pain. Our GI team feels comfortable only seeing us monthly now! Lincoln is super happy about that, but labs still may need to be weekly.

Lincoln has been testing positive for EBV for some time now. This isn’t a huge concern as he is not showing symptoms, but it’s something he can’t fight being on an immunosuppressant. Since that is the case, the doctors have been playing around with his immunosuppressant dose. They lower it when his EBV numbers are high so that his natural immune system can fight it off. It’s important to still be on top of the EBV because it can cause breathing problems.

We will be seeing ENT next week to follow up on Lincoln’s laryngomalacia. It has been getting better but there was a period when it got really bad. They want to make sure there’s nothing obstructing his airway and that his case will be one that will resolve on its own. With colder weather coming, it’s better to get this out of the way so we know what to look for and can make sure Lincoln stays safe.

We are coming up on 5 months post transplant and we are so proud of Lincoln! At 6 months, he will get an ultrasound to check on his little liver, an echo to check on his heart, and vaccine titers to see what 4-month-old vaccines got messed up by the transplant process. Eeeeeep!!