Sunday, February 6, 2011

Plugging Along; Doing Well

Two weeks ago when we sat down in our consent conference to sign all the paperwork and acknowledge we understood all risks involved with his transplant, the mood was somber, yet we remained hopeful and peaceful with the course of treatment we have followed. I must admit that I wanted to break down in tears a couple times, but held it together. The plan for each day was laid out. A schedule of when to anticipate the side effects was discussed and presented as fairly predictable and not particularly pleasant. Oh course, the ever-present caveat is always added, "But every child is different." William has some markers in his blood that put him at a higher risk for infection, but again, it's not a guarantee. All we can do is prepare the best we can and move forward. Then we wait and see how it all pans out.

So we wait. We wait for things to happen. We are at Day +6 and things are good. (14 days in the hospital so far). The mouth sores that should be starting to flare up haven't. He has some in his throat, but manages to eat a little each day without complaining and without morphine. The nurse is hoping the 7 popsicles consumed during the infusion of the Melfalan protected his mouth from the worst of the sores. The doctor is quite pleased with his progress and keeps pushing off the I.V. nutrition one more day. William is not eating much, but adequate to keep his weight from plummeting. The longer he can avoid the I.V. nutrition, the better his liver will be.

William has been paired up with a first year medical student, Josh, in the hospital's new Peds Star program. Josh stops by every other day or so and hangs out with William. He's great and brought movies, popcorn, chips, cookies, and soda last night and hung out for a few hours. William only managed to eat a little popcorn, but had a great time giggling at cartoons. I took the opportunity to leave for some fresh air and a shower.

Ryan and I are doing the tag team thing today. I am anxious to see the boys, sleep in my own bed for a few nights, and not eat out for every meal. Ryan has had a busy week at work and spent all day on Saturday painting William's bedroom. Hopefully things will continue at a mild pace with William so he can recharge a bit.

I feel like all I can do is just hash out a recap of the recent events with out any meaningful insights or poignant thoughts. I'm tired. I'm just staring out the window at the blue skies, blue water, and sunshine that my phone tells me is registering near 70 degrees today! I can't wait for the drive home with my windows rolled down and fresh air to breath.

1 comment:

  1. Hi Julie, you don't know me. But I wanted to tell you how useful your BMT suggestions have been. I provided the list to my friend, Maya. Her 3 year old son Ronan (, diagnosed with StageIV NB is getting ready for his BMT soon. I wish everything goes well with Will's BMT and hope he recovers fully.

    Your blog has provided us with some light into an obscure and difficult process. So Thank you!

    Know that you and your family are in our prayers,
    Fernanda Borletti