Monday Monday...Blah Blah...Blah Blah Blah

1/4/2010 Monday

We survived our first day back and little boy slept last night too! He woke up as we were going to bed at 10:00 but Paul had the magic touch because he went back to sleep and slept until 6:30! Boy was it hard to wake up at 5:30 today and face reality though. I think I heard the groan of every MN teacher as we headed off to a brand new day.

Paul picked up Will and brought him down to the Hem/Onc clinic for his appt. I was able to join then as soon as I could leave school. They sent William for a CBC (Complete Blood Count) finger stick and I ran into my boys as I came off the elevator. We headed back to the room to wait, and wait, and wait.

They were waiting for his counts to come back and his ANC (Absolute Neutrophil Count) always takes longer. They wanted to see what the GCSF (Granulocyte Stimulation Factor) medicine has done to raise his neutrophil level in the past two days. A nurse practitioner looked at his abscess site on his bottom and thought it was looking better. It is less swollen and red.

The Hematologist came in to share that his neutrophil count was only around 150 today. BUMMER since we have been giving him GCSF for the last 2 days. She was disappointed as well since her goal right now was to help him fight the infection with GCSF and then hopefully take him off of it so we would get on our merry way with the 3x a week finger sticks to find a baseline of his neutrophil levels. She said now she would like him to continue GCSF for 10 days or so and we’ll wait to see what our next move is.
We had to make a choice today on how we will administer the GCSF. We can learn to give baby shots subcutaneously (in his chub like insulin) or they could insert a catheter into his arm and then we would poke the needle into the catheter instead of poking him ourselves every day. For now we chose the catheter. It is called an Insuflon® Subcutaneous Catheter. They put some numbing cream on his arm for a while and then came to “papoose” style wrap him up and put in the catheter. Even though they numbed his arm, it hurt him and he cried hard for a few minutes. Then they administered the GCSF through the catheter.
We thought this was the best choice for now but afterward we learned that we can’t give him a full bath with this catheter as we can’t get it wet. Also the catheter would need to be changed each week, which would require office visits or a home care nurse to come and do it. It would be nice to avoid having to poke our own baby but we’ll see which route works best as time goes on. (We can change our minds at any time).

Unfortunately the GCSF will not arrive from overnight shipment in time for us to learn how to administer it tomorrow so I will have to take William straight to the Hem/Onc clinic after school to get him another dose. Then Wednesday a Home Care nurse will come and work with us to learn how to start giving it to him ourselves at home.
We finally got to leave the clinic at 6:00 tonight and brought our very hungry boy home. The up side to today is that he seemed to do very well back at daycare. Paul said he was playful and happy when he picked him up and Jan said he ate well all day. He again could nap a lot more but hey 1 thing at a time! The cool thing was that William was clapping his hands on his own several times this evening. They have been doing that at daycare a lot and I know being back with his friends helped him to share his new trick. (I’ve seen him clap a little before, but not without prompting him).

Maybe tomorrow will be a little smoother. :)
I think I’ll go to bed at 9:15!

Take Care!
~K, P, and W