Even for me there are times when I think, well it cannot be all that bad. It it is. Everything about her condition is serious.
An MRI or MRA for an adult is no big deal. You go in with out any metal, and you lay still, get some images and go home. But for an infant laying still is not really something they do. Even when they sleep they twitch, and jerk. So to get the images needed Zoë needs to get anesthesia. She also gets a breathing tube, because some of the images taken require her to hold her breath. Something again she cannot be told to do, so the doctors do it for her with the breathing machine.
She also needed an echo cardiogram of her heart. Since chemo can affect the heart the anesthesiologists need to know what condition her heart is in prior to putting her under. This was both painful, and very hard to watch. The technician could not place the (Well I don't know what they call it, a wand? The device that picks up the image.) in the usual spot on Zoë's chest because of the broviac. So she had to press hard into Zoë's solor plexus. I tried to comfort her with lots of sweet ease, and a pacifier, but even that did not work. So for a half an hour I got to hold my baby down while a woman tortures her with that ultrasound slime goo, and that probe thingy.
After that torture comes the starvation. Like adults, general anaesthesia is done on an empty stomach for infants, and for Zoë this is torture. Today she spent hours crying and so unhappy. I tried to distract her, hold her upright, and facing away from me, while watching a video of the ocean. Walking, singing, strolling. We even had a music therapist stop in, and he tried singing with a guitar....did not help. Poor guy. I did warn him that she was on food restrictions... Nothing was working so I had to resort to letting a nurse take her and hold her. When I am holding her Zoë just gets mad because I won't let her nurse. She also screamed much of her time with the nurses too...
The MRI team told me that Zoë did great. No bad reactions, and they were able to get all of the images that they wanted.
Zoë returned from her test with a sore throat, and a bit pukeish. But with some extra cuddles from Daddy, and Mommy, and some nursing she is now fast asleep.
Tomorrow is a big day for Mommy and Daddy since we will get to have a meeting with her doctors after their conference on Zoë. Her entire team, from the Oncologists down to her the people setting up home nursing will be discussing where Zoë is in treatment. Then they will determine what to do next for her.
I still think that surgery is coming soon for her. I don't know if it will be after round 3 or 4 of chemo, but I have a suspicion that they will try for after round 3. The faster this tumor can be removed the less of it there is to potentially break off, and cause more cancer elsewhere in her body.
So fingers crossed she will be getting her surgery in a few weeks.
So...what have I been up to these last few quiet days.
As you can see I launched Zoë's website: www.teamzoecancersucks.com. Yup just plugged the site. *smiles* My plan is to start migrating my postings off of Facebook and onto Team Zoë. I will not cut you all off cold turkey. I will give you all some time to add her website to your favorite list so that you can get used to going there for my blog.
(Disregard last sentance if you are reading this on Team Zoë.)
The website has received so many wonderful responses. Beautiful emails to Zoë that we are saving to show her one day. I hope to make a little book for her so she can read what everyone has written to her. Zoë's prayer map is filling in with people from all over. I have only added people from my facebook page so far. Tomorrow I will add people from Zeppo's page.
I have also been doing a lot of thinking lately about my current living situation. I have decided that I am now a resident of Boston. I think I can officially say that I have lived in Boston. We are now on week 5.
My accommodations are like that of most any Boston resident. Cramped. I have a one room, with a roommate. She is noisy, inconsiderate, selfish, and wakes me up several times in the night. She does not clean up after her self, and has way more stuff than I do, even though I am paying the rent. Our rent is probably the most expensive in town for our square footage, however, we do have a wonderful cleaning staff, personal chiefs, on call maintenance, and all kinds of wonderful people who are willing to babysit.
Wow look at the time! I am off to crash before it is tomorrow. Oh, I cannot wait for that meeting with the doctors.
I so hope that that tumor is down. Even 5 percent reduction would make me happy!
This post is brought to you today by the wonderful people at the Ronald McDonald House. This is where Zeppo is staying tonight. Which means he will be here early tomorrow, and well refreshed. Which will be a huge help for me. Because I have a lot of t-shirts to mail out. *smiles*
Love and Hugs!