Wild Mouse

Imagine the craziest roller coaster you have ever been on.  Ups and downs, twists and turns, loops and sudden starts and stops.  Every emotion seems to go through you as well.  Laughter, crying, screaming and fear.  That's exactly what life in the ICU feels like for us.  Two days ago Eli was doing really well and making so much progress and we genuinely thought he would be off this intense oscillator any time.  Today, things look pretty different.  Our poor little baby is quite sick and the doctors are having a hard time figuring out exactly what's wrong.  We know that Eli's lungs aren't working properly but it's likely because he has some sort of virus attacking them.  He has already tested positive for the Rhino Virus and CMV so those two things are probably making him pretty sick but there's still a chance he is being affected by Engraftment Syndrome as his body attempts to accept the new marrow and create white blood cells.

When Eli tested positive for CMV about 6 weeks ago he was put on an antibiotic to hopefully keep it under control until he engrafted and his body produced enough white cells to fight it.  Unfortunately his CMV levels have continued to increase so last week they did a CMV resistance test to find out if his CMV was resisting the particular antibiotic he's on.  The resistance test came back negative which is good because he can continue to take that antibiotic as well as another one but when the test came back his doctors found a type of CMV mutation they have never seen before.  Typical, right?  Haha.  They contacted a CMV specialist in Alabama and he too has never seen this mutation.  Our little fighter continues to beat all odds!  This means he's going to beat the odds in the good ways too, right? :)

Another major issue we continue to deal with is the fluid Eli is retaining.  He is on several diuretics to help him urinate more but they don't work super well.  He also still has the drain in his tummy and that gets out about 600ml of fluid a day but he continues to retain a ton of water in and around his lungs which is making it difficult for them to heal.  The discussion today is whether or not to start a form of dialysis to get some of this fluid off of him.  Of course there are pros and cons to everything but dialysis is serious enough that the doctors will discuss with us the cost vs reward and we'll decide from there whether or not to go ahead with it.  Hopefully we will be inspired enough to know whether or not this is what's best for Eli right now.

I feel like Logan and I have handled this whole journey pretty well.  We've tried to take it one day at a time and always keep a positive attitude because despite the challenges we face as a family every day, there are always just as many blessings we receive as well.  Yesterday was probably the most difficult day we've faced in the hospital.  Nothing too extreme happened but everything seemed to catch up with us a little bit.  I had such a hard time just looking at my little boy in his crib and not being able to do anything at all for him but look at him and kiss his little forehead and hope he could feel how much I love him.  I hope to never again take for granted the simple things that we usually don't appreciate like changing our baby's diapers and listening to them cry or simply being able to hold and cuddle them.  

Logan and I have great faith and hope that Eli will pull through this and one day soon be a strong little boy and have the opportunity to learn and grow just like we dream of.  It may be a rocky road getting there and we will likely be on this roller coaster for longer than we'd like or initially expected but I have no doubt we can also learn things from this experience that we couldn't learn any other way as long as we allow ourselves to.  Despite the amount of faith or hope we have, there is NO WAY we can do this alone and feel incredibly blessed and grateful for the amount of prayers, support and love that is sent our way.  We can feel it every second of every day and cherish it more than each one of you know so thank you!

Fight on, little Eli!