Further developments...

Hi everyone,

As many of you know already, Levi’s blood cultures have continued to come back “positive” since late last week, which means that he is still fighting a bacterial infection. Right before I left the hospital on Sunday to travel home, the nurse told us that they had finally identified the specific bacterial strain he was battling. I don’t know how to spell it, but the good news was that it was listed as susceptible to antibiotics. They adjusted the type of antibiotics he was prescribed based on this discovery that evening.

Yesterday, after another culture had come back positive (which would have been drawn after his antibiotics had been changed), the doctor decided that Levi’s central line needed to come out. Steph and I had been wondering about that, since his fevers had disappeared, his blood pressure was stable, and his appetite and energy levels had returned. This led us to believe that maybe the bacteria that was causing positive cultures was harboring in his line. The decision to take his central line out was a quick one and kind of caught us off guard, as we originally thought they were just going to add another antibiotic to see if that helped. The doctor also wanted a PICC line put in to facilitate the remaining antibiotic doses and blood tests over the next couple of weeks. They had a little trouble finding a PICC team on such short notice, but after a good deal of work and a lot of phone calls they were able to get a team lined up from Methodist Hospital. I wasn’t able to take off and head down for the surgery, but a special thanks goes out to my mom and Steph’s dad who both traveled to the hospital to be with her while Levi was in the OR.

They took him back for surgery around 5pm, and were able to remove the central line with no issues. The PICC team, however, had some trouble. They tried three times to get a PICC line put in his arm, but every time they weren’t able to get it past his shoulder. Steph asked if perhaps the difficulty was caused by him being double-jointed (sorry dude, you get that from me), and they seemed to think that could have been the issue. So, after quite a bit longer in the OR than what we were expecting, he emerged with two IV’s (one in each arm), giant cuffs on each arm, and a dozen or so little spots on his arms, hands, and feet where he was poked. I am glad he was out for the procedure.

He was literally irate after waking up from surgery. He did not have use of either of his arms due to the cuffs they had placed over his IV sites. They had to give him some medicine to calm him down, which helped. Steph mentioned that she couldn’t even keep him on her lap, and I am pretty sure he may have even taken a couple cuff-padded swings at her. Poor guy, he has never had an easy go of it waking up from procedures like this. After they got him back up to the room, he ate a big dinner and was a different kid after that. I could hear him over the phone chatting away and playing with the TV. He even “mooed” at a kid crying down the hallway who apparently sounded like a cow.

Clearly, the surgery did not go quite as we hoped. The cuffs and IV sites are annoying him (although he stared at his chest for quite some time wondering where his lines went). He now has to get his blood drawn the old fashioned way – with a good ol’ needle poke. As for me - I was not impressed. My first reaction, honestly, was anger over the apparent fact that the surgery team apparently rested their starters and gave their JV squad a chance to play. I was not a happy dad last night. But I know they gave it their best shot and did what they could, so this morning I am consciously choosing thankfulness over bitterness, something that is not easy for me. So – here goes… I am thankful that Levi made it through surgery ok and there were no complications with his anesthesia. I am thankful that he no longer has a central line in his chest. I am thankful that whatever his current IV set up is we know that it is temporary and that he will be home soon without it. I am thankful that his little good-natured attitude and the joy he takes at the small things in life serve as an example for me. I heard from Steph this morning that his ANC is now officially zero, which means his immune system is non-existent. Now we wait for little flickers in his blood counts that signal a rebound. We are praying that his blood cultures start to come back negative now that his central line is gone so that we can really start looking forward to bringing him home.

I have been humbled by the sheer number of people who, in talking with us about Levi’s battle, shared their own war stories of illnesses, accidents, and scary experiences they have encountered with their children. It’s interesting, though, that many times these parents feel the need to qualify their stories when they share what they’ve been through just because they feel the severity of their experiences is not as great as Levi’s. We’ve had moms and dads tell us about all kinds of things, from surgeries to an experience with the flu to broken bones to a child knocked down from a bout with pneumonia or a viral infection. Then, after they share their experience in a moment of vulnerability, follows a statement like “I know it’s nothing like what you’re going through” or “Not like I’m pretending to know what it’s like for you guys.” I know these little qualifying statements are meant with good intentions, but let me be as clear as possible…

Do not, ever, feel like you need to qualify any experience you’ve had with your child.

Any parent who has held their child in their arms while he drifts into unconsciousness before a procedure, who has watched as their child stares backwards over a nurse’s shoulder as he’s carried off for surgery, who’s woke up in the middle of the night to stare over a hospital crib rail to make sure the rising and falling of your little one’s chest continues, who has committed the most precious and protected thing in their life to the care of a complete stranger in scrubs or a lab coat knows the pain, anxiety, and fear that we feel. I don’t care what the circumstance was; you were not alone in your struggle then and neither are we now. All of us, when our little one was born, were granted the title of “parent”. Your battle stripes and the right to cry at your kid’s wedding, though, were earned in the trenches of hospitals, doctor’s offices, waiting rooms, and church altars. You know what it’s like to fight the good fight while on your knees in silent prayer or screaming up at the skies or patching up fist-shaped holes in a wall. You, as a parent so madly in love with your child, bear these burdens in silence so your child sees only a strong comforting mommy or daddy who won’t leave their side.

So please; never feel like the battles you’ve fought for your children are insignificant, secondary, or not worth the time to share. Your badge as a parent should be worn with pride, and anyone who thinks otherwise better hope they don’t run into us in a dark alley or parking lot on one of our tough days. You parents know what I’m talking about.

There, got that one off my chest…

Love you all,
Michael, Stephanie, Caylee, and little Levi