Not what we were hoping for....

Blood cultures just came back with some positive growth in his red lumen. Gram Positive Cocci, we are told. They'll know more once they test for more sensitivities. I'm in shock, to be honest, and discouraged, although we are told this can happen with treatment. Three blood stream infections in three months. As Piper would say, "what in the world??" The good news is other than not really eating and a low-grade fever, Watts seems to be doing well.

Morning smiles.

Cultures are negative, meaning that in 24 hours they haven't grown anything. Good news for our little guy! Also, fever has stayed down off of Tylenol this morning. His ANC is still zero and he needs a blood transfusion and most likely another platelet transfusion, but overall we are encouraged and very thankful!

Fever and smiles.

Watts' fever has been manageable with Tylenol today and we've even gotten some smiles this evening! Hoping tonight is a good night of rest and that he wakes up fever free in the morning.

Still waiting.

Fever is up to 103. Still waiting on blood cultures to come back. Getting antibiotics today as well as some platelets.

ER trip.

Watts' spiked a fever late last night so we made an immediate trip to the ER here at Brenner. We are admitted and waiting for blood cultures to come back. He could have fever from his low ANC (it is currently zero), from a common virus, or from a bloodstream infection. Regardless, we are here until his fever drops and his ANC starts climbing. Please pray that it isn't a bloodstream infection. Some bloodstream infections can be "minor" but some can also be life threatening in a baby with such a compromised immune system.

Ramblings from Papa

Yesterday, I (Michael) think I hit a new waterline of exhaustion. The combination of the past 3 months of hospital stays, selling and buying houses,  moving out-of and into those houses, and a little guy feeling terrible from so many drugs had me feeling not only tired, but aggravated by nearly everything. It's that jittery feeling like you just need to escape, but to what? And to where? I have such a mixture of emotions about life right now. For example, we're in this beautiful house-- our dream house!--  and we had about 50+ people help us get moved and settled, but we've had so many bad nights of sleep in a row that it's hard to feel relaxed in it. So often I find myself in this strange mixture of feeling overwhelmingly grateful and sulking, like I'm 3 years old again.

Speaking of 3-year-olds... Piper is completely adorable right now. Her imagination is blossoming and she's loving the new house. She's noticing all the little quirks (little cracks and bumps in the walls, etc) and continually asking when I'm going to fix them. Yesterday when I got home from work, she was hungry for my attention and calling out "Papa! Papa!" about every 15 seconds or so. And, like I said, I was feeling depleted and discouraged. I tried my best, but felt that I had so little to give. And so little patience! At best, I wasn't engaging Piper; at worst, I was impatient and dismissive.

Some prescriptions needed to be picked up at Walgreens, so Hannah suggested I run out and get them while she got pjs on the kids (thanks babe). When I got back we settled into our "regular" routine of Hannah nursing Watts and putting him to bed and me reading and singing to Piper.

She's in bed with me sitting on the floor beside her, and after a few books I say to her: "Papa was impatient a lot tonight, huh?".

And Piper says, "About what?".

"About a lot of things. I'm really sorry for being impatient with you and not listening to you. Will you forgive me?"

"Of course!" she says, and gives me a hug.

Then she rolls onto her side, ready for songs, and I notice that she's wearing a shirt from the Ronald McDonald house, where she has spent weeks living over the course of this summer while we've been caring for Watts in the hospital. This is a picture of grace, I'm thinking. This little one is resilient and wonderfully forgetful. She holds no record of wrongs. She's always trusting, hoping, and persevering, and she brought her Papa to tears with the strength of her little heart. My, what a gift– very thankful.

Today.

Messy kitchen. Steroid crazy baby. Three hour clinic wait. Front porch sitting. Sleepless night (every night).

I wrote a longer post but it disappeared so that's a speedy recap. We are heading into a few days where he'll be off of steroids and we are excited and hopeful that we'll see old Watts, our jolly little guy, reappear.