July 30, 2011 - Day #57

Riker has finally been allowed to come home! It is only for the weekend but it feels incredible to have my family together for the first time in nearly 2 months! Valentine's reaction at seeing Riker was amazing. "Riker! You're here! You're really here! I missed you!" Oh... I'm kicking myself for not having my camera ready.

Coming home is such a blessing but it does not come without its own stresses. Leaving the hospital after a 2 month stay is much like moving out of a dorm. I had several car loads that I took home in preperation of the leave. On top of that, I got my first delivery of home care supplies. I got a bio hazard bin for needles and the like. And I got a giant bag of dressings and syrnges so that I could flush her central line and change the dressing. We'll only be home until Monday so I'll only need to flush her line once or twice. It is still incredibly intimidating.

Riker's central line, which leads almost directly to her heart, needs to be diligently taken care of. This is the single most likely source of infection for her and infection is the single most likely cause of death for a child in her situation. At the hospital, Riker is getting her vitals checked every 8 hours. At the hospital, she'd be treated immediately for any sign of infection. Take all the anxiety of bringing home your first newborn and multiply that by some ridiculously large number and you can just about imagine how anxious I am.

Riker is teething. Like any baby who is teething, she drools and her nose runs when she cries. Oh... and she does cry. Ugh... I know nothing is wrong with her but I am still scared. Also, it was almost 100 degrees out today. Did she feel like she had a fever? Not really but she was hot. Oh... yea... so was I. All the confidence I have had from taking care of Valentine for almost 3 years has completely gone out the window. I have a sick baby.

Tomorrow afternoon, a home care nurse will come to draw blood from Riker. On Monday, we'll find out if her counts are high enough for her to start her next round of chemo on Tuesday. On one hand, we really want her counts to be high - that means she's recovering well. On the other hand, if her counts aren't quite high enough, we might get to keep her until Wednesday. Monday is only day 28. Most people do not recover until day 30-35 for their second round of induction. Riker, of course, is not most people.

For now, we're going to enjoy having Riker home. We are going to all enjoy having our family together for such a beautiful summer weekend. To quote my oldest daughter, "Mom, it's perfect!"