I walked in this morning to Phoebe saying “Hi Mom, Hi Mom, Hi Mom”…it was precious! She was sitting up visiting with her Aunt DeDe and playing with toys and her eyes were so open and alert, it was wonderful. I will have Nathan take some video of her tomorrow to post on the website.
The meeting today was fine, I’m not sure what I was expecting, but we didn’t really learn anything new. The main take-away was that Phoebe needs to continue to be weaned from the Vapo-therm breathing help and the extra pain meds she needs from time to time before she can move floors. She will continue to wean from the Methadone and Valium over a period of time and can do that on the HEMOC floor.
I wasn’t expecting to discuss chemotherapy treatment in this meeting, but her Oncologist said today that they would like to go ahead and place the Omaya port in her head at the end of this month. This is the port that will deliver the Methotrexate directly to her tumor site. I almost broke into tears at the thought. Nathan and I have a lot of questions and concerns but I felt it was best saved for another day when we can meet one on one with the oncologist do discuss her treatment in depth. For now she is on a vacation from chemo and just focusing on recovery.
Tomorrow morning she will have a dye test, where dye is placed into her NG tube and a scan is taken to make sure that the dye stays in all the right places. She has some fluid is her abdominal cavity that has been slow to reabsorb and since her tummy distension is an ongoing issue they are going to continue to search it out.
Over all, Phoebe is doing great. She can say a few words but seems to have a difficult time forming them and that is probably my biggest concern. My prayer is that when she gets her swallow reflex back she will be able to form her words again. She is “all there”, just woozy from the Methadone and Valium, can follow instructions, can make a little smile, and she responds to us. I am trying to be patient in her recovery and it’s difficult. I’m so thankful for the progress she has made and for what God just brought her through and at the same time it’s difficult to see my Phoebe unable to tell me what she needs with words.
Right now she is contentedly plucking blocks out of one bucket and placing them in another. I expect we’ll have lots fun tonight, it looks my 3 am party girl is back!
PS. Don’t forget to watch Phoebe’s “Orange Popsicle” video on the side bar!