Zoe has bad veins. It’s a well known fact here at the clinic. Her veins for blood draws are fine but those are too small for IV’s. Whenever Zoe needs an IV or in her case the last week, a new IV because the old one quit, she freaks out and her veins turn into Houdini and pull a fantastic disappearing act. This is a real problem since her gancyclovir is an IV medication. To help combat this problem she went into the O.R. to have P.I.C line put in again. Before you say a collective “Aw that poor baby,” she is happy about it. Ecstatic actually. This means no more pokes because it has 2 ports on it so you can draw blood and give meds through it. It’s above the elbow so she has the use of both arms and hands.
The bad news recently is that the viral load is continuing to go up not down. Infectious disease has assured me that without the gancyclovir the numbers would be much much higher. In short, she’s not as bad as she could be but she’s not getting better. Her tonsils are still swollen together and she’s still running fevers. Dr. Foster from I.D. feels that this is all related to CMV but wants to test her for other things to make sure. So far all the other cultures have come back negative but respiratory was in last night and swabbed her nose to check for respiratory viruses. The general consensus is that those will all come back negative.
So I guess the important question is what the heck are these “professionals” doing if she isn’t getting better? Last night she was given a dose of cytogam. Cytogam is CMV antibodies collected and pooled from the plasma of CMV positive donors. Since they are positive that means they’ve had CMV and have made antibodies against the virus. These collected antibodies are then given to people like Zoe intravenously. The viral load is going to be checked again tomorrow and if another dose of cytogam may be given. In the meantime, ENT is working with I.D. & Dr. Boyle regarding Zoe’s enormous tonsils. Steroids are generally avoided in immunosuppressed people because they further suppress the immune system. However, because Zoe’s tonsils are “kissing” they are going to give her 1, possibly 2 doses of steroids to bring down the swelling.
Zoe’s birthday is in 2 weeks and it looks like we’ll be celebrating it here. Gabe’s birthday is Thursday and we will definitely still be here. He’s very bummed about that and I don’t blame him. So we’ve decided to get a small cake & celebrate here.
5 comments on “How’s life on the outside?”
February 28, 2009 at 4:39 pm
Do not give up! Things of this huge magnitude take time to work out. I pray for you daily. I have friends with kids with cancer and leukemia and this is best looked at as a ‘couple year’ process. There is no quick healing, but there is life, and for Zoe’s we are so grateful! Much love to you!
March 2, 2009 at 6:21 pm
Thinking positive thoughts and hoping for a wonderful outcome from this. Keeping all of you in our thoughts and prayers.
March 2, 2009 at 8:06 pm
Well Zoe, you made it through one of the toughest fights of your life and received the gift of a new heart, you can make it through this fight also.
Keep fighting and before you know it you will be home again.
March 5, 2009 at 10:19 am
warm thoughts and healing energies to you Zoe,and family hugs to you! Keep on with your faith & positive outlook you’ll soon be where you want to be. Home!
March 5, 2009 at 5:46 pm
I swear you guys can’t catch a break. Keeping you and Zoe in our thoughts and our fingers crossed.
Comments are closed.