10.5.09 -Update on Baby Emma...from Emma's Mom, Sophie:
"Today is day 16 and Emma is still in the PICU. A few days ago, they removed the drain from her head that collects all of the additional blood and fluids that should naturally be redistributed into her system and expelled (pee and sweat), but for Emma, it seems her brain is not getting the message, and she is accumulating fluid where she got her craniotomy (where her skull is missing). Luckily it does not seem to be pushing into her brain so her ICP levels have not been affected by it. She had yet another CT scan (this has to be #7 or #8 now...) this morning which confirmed it is just fluid and not new blood. There is talk of a possible infection, and talk of needing another surgery to add the drain again, or another procedure where a tube would be inserted from her brain to her tummy - this would be permanent - I hope this does not happen. So in the meantime, the 'tree hugging granola cruncher' side of me is trying Arnica Oil on that side of the skull in hopes that it will reduce inflammation and get some fluids moving around. I am also waiting for the pharmacist to approve adding some Omega-3 oil - can't hurt, right?Emma has been moving her limbs a lot more lately. Her right side is a lot weaker but hey, she's moving, and that makes me happy. It gives us hope that she will be able to walk someday. She twitches her eyelids - this is how we know she is awake. I really think she is trying hard to open them but doesn't have the strength yet. Although the nurses say this is normal as she slowly wakes, the hardest thing to watch is our little girl have bouts of 'coughing' where her face turns red, her body trembles and stiffens, and tears roll out of her closed eyes. It breaks my heart to see her in pain. The nurses suction her ventilator tube to remove the yuckies and she then calms down. They have started to give her Adavan (sp?) to knock her out when she does this - her ICP's go sky high, so this helps bring those numbers down. Her hospital bed is a stuffed animal zoo - she is going to be so excited to meet her new animal friends when she wakes up - thank you for all of them!
Ava is doing ok. My mom flew out from France to take care of her, so she is living as close to normal of a life as she can, except for now mommy and daddy don't live at home, and she comes to the 'hosipal' every day for a couple of hours... we are not sure letting her see her sister is the best thing right now, so we just play in the courtyard or at the Ronald McDonald house. Tyler and I are hanging in there. We are so grateful and humbled by all of the love, dinners, thoughts, prayers and support that our sweet Emma is receiving. Thank you all for your continued prayers and positive thoughts.
~Love, Sophie and Tyler"
"Today is day 16 and Emma is still in the PICU. A few days ago, they removed the drain from her head that collects all of the additional blood and fluids that should naturally be redistributed into her system and expelled (pee and sweat), but for Emma, it seems her brain is not getting the message, and she is accumulating fluid where she got her craniotomy (where her skull is missing). Luckily it does not seem to be pushing into her brain so her ICP levels have not been affected by it. She had yet another CT scan (this has to be #7 or #8 now...) this morning which confirmed it is just fluid and not new blood. There is talk of a possible infection, and talk of needing another surgery to add the drain again, or another procedure where a tube would be inserted from her brain to her tummy - this would be permanent - I hope this does not happen. So in the meantime, the 'tree hugging granola cruncher' side of me is trying Arnica Oil on that side of the skull in hopes that it will reduce inflammation and get some fluids moving around. I am also waiting for the pharmacist to approve adding some Omega-3 oil - can't hurt, right?Emma has been moving her limbs a lot more lately. Her right side is a lot weaker but hey, she's moving, and that makes me happy. It gives us hope that she will be able to walk someday. She twitches her eyelids - this is how we know she is awake. I really think she is trying hard to open them but doesn't have the strength yet. Although the nurses say this is normal as she slowly wakes, the hardest thing to watch is our little girl have bouts of 'coughing' where her face turns red, her body trembles and stiffens, and tears roll out of her closed eyes. It breaks my heart to see her in pain. The nurses suction her ventilator tube to remove the yuckies and she then calms down. They have started to give her Adavan (sp?) to knock her out when she does this - her ICP's go sky high, so this helps bring those numbers down. Her hospital bed is a stuffed animal zoo - she is going to be so excited to meet her new animal friends when she wakes up - thank you for all of them!
Ava is doing ok. My mom flew out from France to take care of her, so she is living as close to normal of a life as she can, except for now mommy and daddy don't live at home, and she comes to the 'hosipal' every day for a couple of hours... we are not sure letting her see her sister is the best thing right now, so we just play in the courtyard or at the Ronald McDonald house. Tyler and I are hanging in there. We are so grateful and humbled by all of the love, dinners, thoughts, prayers and support that our sweet Emma is receiving. Thank you all for your continued prayers and positive thoughts.
~Love, Sophie and Tyler"
Sophie & Tyler,
ReplyDeleteI’m so sorry for all that you are going through. Please know that there are countless people all around the world who are thinking about you and praying for little Emma. Hang in there.
Big hugs,
Elaine Scholpp
Sophie,
ReplyDeleteIt's so hard to read about Emma's tears :(
Hang in there, I pray her days become easier and easier... baby steps. Sending lots of good thoughts and strength to all of you.
((hugs))
Virginie Albert
I am sorry for all you are going through. Emma is a beautiful little girl. I will be thinking lots of positive thoughts for her and for your family.
ReplyDeleteSorry isn't the word for it.....my heart breaks for you and your family....tears are pouring out for you even though we have never met...
ReplyDeleteWe will pray for you and hold emma in our hearts. Her pictures are so beautiful and I cannot begin to imagine what you are feeling. My heart and mind are focused on your family, along with so many others, and we are sending prayers, love, positive energy and well-wishes your way.
Thank you for the updates.