Home 12/13/2009

12/13/2009 Sunday (Will’s 10 month Birthday)

We slept in today and they came around 8:00 to prick Will’s finger for his CBC (Complete Blood Count) test. After that we had a fairly mellow morning. Will woke up happy and spent some of the morning playing in his crib. Various doctors visited us with small hints that we may go home today or tomorrow. We tried not to get our hopes up.

We got incredibly wonderful news when the CBC results came back today! His Neutrophil levels were going back up thanks to the GCSF (Drug that helps to raise them).

William’s Neutrphil levels were somewhere around 170 yesterday. Anything below 500 means SEVERE Neutropenia and is very dangerous. The lowest level he had this week was 78. To continue painting the picture, the bottom of the “Normal” range is 1500. Today, Will’s Neutrophils were back up to 1400!!! Woo hoo!

They also got some lab tests back that showed specifically which bacteria were causing his infections. That way we could take him off of the Vancomycin (Broad spectrum antibiotic) and get him on one that could specifically fight what he has.

We got to give Will a bath today and hid Godfather Cory came to visit. He brought him a black lab puppy stuffed animal, which he had a blast cuddling and sliming all over with drool.

After seeing such great things today they decided to let us go home this afternoon. We were SO happy!

This week we will bring William to his regular pediatrician for a check in appt. We will also start a routine of 2 finger sticks in the lab each week to run CBC’s. We will have to do this for a month so they can watch to see if William has “Cyclical Neutropenia.” That would mean that his Neutrophil levels would sometimes be normal, and sometimes they would drop as he would cycle through a period of time.

We will also go to an appointment at the Hematologists office to discuss many of the test results as they come in. William will have his second finger prick of the week there. Obviously we are hoping for a result that tells us that his problem is conditional and could be something that he will outgrow, but at this point there are still to many options to try to hang your hat on one or two. We are definitely not out of the woods yet so we need to be prepared for anything.

Leaving the hospital was very exciting but was also bittersweet for many reasons. We feel like we got wonderful care for our son from a team of doctors and nurses, all giving their best for him. We were reassured at the times we felt like everything was out of our hands, and everything was explained step by step and repeated if necessary. I think I have never heard “Do you have any questions?” and “Is there anything we can do for you or bring you?” more than in the last 5 days! Watching William improve over time despite all the pokes, prods, and procedures was definitely reassuring too.

Today we spent a little time walking the halls with Will. He needed a change of space and he dazzled everyone at the nurses stations with his happy disposition and sweet smile. He certainly showed everyone that he was feeling better today. During that walk though we saw lots of the other kids on the floor. Many have cancer or need surgeries. A few were even tiny babies all swaddled up and propped up on the big hospital beds. Nurses sometimes walk around carrying tiny babies to love them and snuggle them when their families can’t stay. Also in the last hour or so of our stay, the child 2 doors down was having some sort of emergency which kept our favorite nurse from really being able to say goodbye to us.

All of these things made us even MORE thankful for the outcome today. We are so blessed and SO thankful for the thoughts, prayers, well wishes, food, time, gifts, and love that we have received so far. Most of all though we are thankful for William and what a tough guy he is. We truly have a lucky charm and we’ve known that since Friday the 13th 10 months ago when he entered our world in suite 7!

Love,
Katie, Paul, and our special boy William