Jim and I met with some of the various groups of people taking care of Rylie today to try and get a better understanding of what is going on. While everyone was helpful there appears to be many different theories and ideas on how to treat Rylie. Because there are other underlying issues with Rylies health we are dealing with so many different doctors. There are so many different teams of doctors who specialize in different things here at Children's it is amazing. The pain management team want to be sure she is being given everything needed to ensure she isn't in pain, which is their objective. However, the heart doctors don't want to over medicate as this can affect her breathing which affects her heart, which is their focus. Then there are the ICU doctors who are here with her during the night when she is miserable and they want to make her comfortable which at that moment is all our objectives. The end result is Ry is going to remain in ICU until this can all get resolved which we are happy with. THis way she has a nurse who just focuses in on Rylie.
Today Ry slept most of the day and Jim and I are praying that doesn't mean we are in for another rough night. If we are.....we are and there isn't much we can do about it right now. We are just really tired and would like to get a solid few hours of sleep. It is amazing how lack of sleep can affect everything especially your coping skills.
We had a nice visit today with Grammy, Auntie Joanie and Auntie Barbara. My dear friend Beth popped in for a few minutes too which was so nice. To my fellow team mates at work......THANK YOU! The care package you sent for RY was such a sweet thing to do. You guys are amazing and I miss seeing you at work.
I will update tomorrow.
Again....thanks for all the great messages.
Mary
Friday, March 20, 2009
Thursday, March 19, 2009
Rylie Update, resting peacefully.
Posted 6 minutes ago
Jim posted some pictures of Rylie's day in Boston Monday before going into the hosptial. We all had a great time!
The top part of Rylie's cast has been removed and she appears to be much more comfortable. The doctors are talking about removing the whole thing for a few days to see if that will help with her beging so aggitated. She is sleeping now and all her stats are looking great! When she wakes up we are going to try and give her something to eat as she hasn't had anything since our dinner Monday night at the Cheesecake Factory. That place is fantastic....thanks Moe Moe for recommending it!
My parents are here so Jim and I are going to grab something to eat.
We will update later today.
Again....thanks for all your kind messages.
Jim posted some pictures of Rylie's day in Boston Monday before going into the hosptial. We all had a great time!
The top part of Rylie's cast has been removed and she appears to be much more comfortable. The doctors are talking about removing the whole thing for a few days to see if that will help with her beging so aggitated. She is sleeping now and all her stats are looking great! When she wakes up we are going to try and give her something to eat as she hasn't had anything since our dinner Monday night at the Cheesecake Factory. That place is fantastic....thanks Moe Moe for recommending it!
My parents are here so Jim and I are going to grab something to eat.
We will update later today.
Again....thanks for all your kind messages.
Keep the prayers coming for Rylie
Posted 21 minutes ago
Rylie had another long night. Her o2 stats were dropping pretty significantly throught out the night. Another chest x ray was ordered and showed her lungs were wet so she was given lasix which helped release the fluid. Also, her cast was loosened around her chest. The doctors think it was too tight and not allowing her to take deep enough breaths. Dr. Millis her surgeon decribed Rylie's mood best he said she is pissed off and boy is she ever! She doesn't understand what is going on at all. They don't want to give her anything to calm her because it effects her breathing and she runs into trouble. They are managing her pain as best as they can.
She is finally asleep now so hopefully she will rest for a while. Thanks for all the kind words and messages.
We will update later today.
Rylie had another long night. Her o2 stats were dropping pretty significantly throught out the night. Another chest x ray was ordered and showed her lungs were wet so she was given lasix which helped release the fluid. Also, her cast was loosened around her chest. The doctors think it was too tight and not allowing her to take deep enough breaths. Dr. Millis her surgeon decribed Rylie's mood best he said she is pissed off and boy is she ever! She doesn't understand what is going on at all. They don't want to give her anything to calm her because it effects her breathing and she runs into trouble. They are managing her pain as best as they can.
She is finally asleep now so hopefully she will rest for a while. Thanks for all the kind words and messages.
We will update later today.
Wednesday, March 18, 2009
Rylie Update
Improving
Posted 22 minutes ago
Well we are happy to report that Rylie has had a much better day. Her fever is coming down and her heart rate is normal. She is still on o2 but it has been lowered to 1.5 liters. An x ray was done again this morning and it indicated that part of her lung collapsed so part of her cast was cut off to provide relief to her chest area and allow some PT to be done. The cast went from her breast area right down to her feet. There was a small whole in her cast around her belly so that was just enlarged. Ry was also given a blood transfusion and it seemed to provide some relief. With her cardiac history the doctors didn't want her heart working so hard and by having the tranfusion this helped.
The staff here has and continues to be amazing. My parents and sister Tricia came down to visit today which was nice because it allowed Jim and I to get some rest. None of us slept last night and we were all feeling pretty exhausted.
The plan is for Rylie to remain in ICU and see how the night goes. She has been sleeping for the past few hours and doesn't seem nearly as agitated as last night. I always knew Ry was fiesty but she gave a whole new meaning to that word last night!
Thanks for checking in.
Posted 22 minutes ago
Well we are happy to report that Rylie has had a much better day. Her fever is coming down and her heart rate is normal. She is still on o2 but it has been lowered to 1.5 liters. An x ray was done again this morning and it indicated that part of her lung collapsed so part of her cast was cut off to provide relief to her chest area and allow some PT to be done. The cast went from her breast area right down to her feet. There was a small whole in her cast around her belly so that was just enlarged. Ry was also given a blood transfusion and it seemed to provide some relief. With her cardiac history the doctors didn't want her heart working so hard and by having the tranfusion this helped.
The staff here has and continues to be amazing. My parents and sister Tricia came down to visit today which was nice because it allowed Jim and I to get some rest. None of us slept last night and we were all feeling pretty exhausted.
The plan is for Rylie to remain in ICU and see how the night goes. She has been sleeping for the past few hours and doesn't seem nearly as agitated as last night. I always knew Ry was fiesty but she gave a whole new meaning to that word last night!
Thanks for checking in.
Prayers for Riley
Our dear sweet friend Riley had surgery yesterday to correct a hip problem. Riley is 4 years old and just happens to have that little something extra like our Vinnie. Her parents, Jim and Mary have quickly become our friends and shoulders (even if they don't realize it) in this journey we began when Vin was born. Riley came out of surgery yesterday and overnight spiked a temp over 104. She will or may have already had a blood transfusion today. This is all the information I have so far but I will try to update as I get updates from mom and dad. So please keep Riley in your prayers and her parents too.
Tuesday, February 24, 2009
Friday, February 6, 2009
One year ago I gave birth to my youngest son. His first week of life was filled with ups and downs. I thought one night that we had lost him. As I rounded the corner to the nursery to nurse my son who was hooked up to machines, a nurse basically threw me back in my room. I caught a glimpse of every nurse surrounding my baby, calling for the doctor “NOW”. The nurse who did the “throwing” approached me later and said she couldn’t let me see my son like that, I am so thankful for her quick reactions. An ambulance trip to a hospital better equipped for our Vinnie resulted in me coming home with no baby, my arms and heart felt so empty and hopeless. Two days later a blood test confirmed Down syndrome, the only description I have been able to relate to is when you are in grade school playing dodge ball and someone catches you not paying attention and you get nailed with the ball right in the gut. But life goes on and I learned that nothing could ever compare to having my two boys in my life, that sting eventually fades away. Because of Vinnie I have so many new people and experiences in my life. I have a whole new “family”. I appreciate the smallest things with such enormous joy that happy tears flow so often, a smile, a laugh, rolling over, grasping, sitting unassisted, crawling, getting into a sitting position. I have my moments of doubt and why me, I guess it’s my job as a mother. One year ago I knew my life would NEVER be the same and it isn‘t, it‘s so much more. So today I am celebrating my sons first birthday, an anniversary of a new found family and a new outlook on what life is truly about. Happy birthday my sweet angel.
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