Forgive me because I can't remember what I have said or mom has said so I will just probably repeat myself....Mikayla is such a trooper. All the nurses just love her. They find her whatever she wants, have made her pictures, and even pop in to say hello even though they are not taking care of her per say. She is so inquisitive and has asked everyone anything that pops into her head. She asked the cleaning lady today is she was married, had any kids, pets, or furniture. She is also scared....she told the dr. that she doesn't want her head cut open. I pretty much lost it on that....
This morning the surgery plans were to go in and try to take as much out as possible, this afternoon that changed. Dr. wants to put in a "shunt" that will be a permanent fixture (all internal so we will never see anything except a scar) to help get the fluid draining right again. This should help with all the symptoms we were seeing, headaches, vomiting, head tilt, etc. Then he wants to biopsy the tumor to determine the best course of action after that. That is all I know. having a hard time looking towards the future...we just want to get through tomorrow. we have no idea when we will be home. best case would be later this week with returning after the biopsy results for further things. Worst case would be weeks, months???
We can't thank you all enough for all your prayers and help with the kids, etc. I only thought this sort of thing happened on tv or to "other people." Chris & I are pretty much on autopiolt right now. part of me is still in denial - i keep thinking that a dr. is going to come in and say "Oh we were wrong - you can go home." But we also know that we are in the absolute best place we can possibly be right now. We have only been here 3 days and Riley is wonderful!! I will try to update tomorrow after surgery. Feel free to pass this website along to anyone as I'm sure I missed people. - Sasha
2 comments:
Our thoughts and prayers are with you. You have all been on my mind during the day and through the night. We are asking for God's guidance for the the surgeons, Mikayla, and Chris and Sasha. We love you, The Malcolms
Hi Sasha and family. Mom (Becki Felten) told us what was going on with Mikayla and about the website. I am sure you heard all about our preemie that we had summer of 2006. I am not sure if anyone shared with you, but Kylie had a brain bleed while in the NICU and developed hydroceplus. We had a shunt placed last March. We can feel the top portion and can feel the tubbing and can see the scar on her belly. I don't know where they will place it on your little one (since Kylie was so little, she still had all of the baby soft spots, etc). ANYWAY, my point is that if you have ANY questions about shunts or anything from a mom who has been there...let me know.
I wish I could be more help. You will definitely be in our prayers. Although our situation was different, I can completely relate to expecting someone to say "everything's fine now" or "wake up, your having a bad dream". Let us know if you need ANYTHING!!!!! WEndy Felten-Cecil
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