We did not end up talking with Dr. Tarnoff today, but hopefully we'll have an opportunity to meet with him tomorrow while he is at UCSF. In the meantime, Riley's spirits have improved. He was grouchy, agitated, and bossy. He was also interested in food. Those all indicate to me that he is feeling a bit better. He is still not eating much, but he did ask for food several times and was upset when I didn't instantly produce whatever it was he was asking for. He also seems significantly thinner. His limbs have shrunk and his face is so skinny. It is just so hard to imagine how much of his weight and chunkiness has been this excess fluid in his tissue and it makes me so sad to think that he has been so uncomfortable for so long.
In other news, Riley will be getting a PICC line (peripherally inserted central catheter) Thursday to replace the femoral IV line. When IV lines are in the groin area, they are at an increased risk for infection. And we want to avoid any other possible infections. Nurses typically like a PICC line because they are easy to get blood samples from and they can last for weeks without trouble. Recall that Riley has a PICC line last year in his neck. The heart cath is now scheduled for Monday 3/12; The cardiac MRI will take place on Tuesday 3/13. Riley also got out of bed for a ride in the wagon today. He was excited to visit all of the cars in the playroom, and he is anxious to play Bingo tomorrow.
Carter's visit to the pediatrician confirmed that he is suffering from a virus and nothing more serious. He was also much happier today after getting the opportunity to stay home and have regular naps while Ken and Grampy took turns caring for him (Suzanne spent the day with Riley). Being carted around to and from the hospital and stuck strapped in his stroller has proven to be quite stressful for our littlest guy. That said, both Suzanne and Carter were suffering from a bit of separation anxiety after being apart the entire day.
Finally, thank you to Christa for a wonderful dinner Tuesday night. She has been working very hard to help set up a meal schedule for us. Thank you Jennifer for our delicious dinner tonight. We are all so grateful to avoid the cafeteria! And thank you to Sheila for running a personal errand for me!
Wednesday, March 07, 2007
Riley feisty, PICC line Thursday
Posted by Mother in Chief at 3/07/2007 08:42:00 PM
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6 comments:
Yay, i like fiesty. sounds like the diuretics are working. is he also getting steroids (i read that was a possible treatment for ple)? wish you best of luck with the picc line. and also with the ple discussions. ple sounds kind of complicated. thanks, btw, for the good link explaining it. you are also so very fortunate to get some homemade food brought to you. my, but aren't you the envy of every patient there. :-)
much love,
Sarah
Fesity, now that is the family spirit we are looking for....teehee! Thanks for the update and glad you are getting periodic rests. You are always on our minds and in our prayers. Love the up to date photos. WOW Hugs Grammy and Wayne
Good news! I'm so glad Riley is feeling better/more himself, good sign.
Your very lucky to have such great friends who also have provided meals and the like.
Thank goodness for Grampy too!
Fiesty IS good!! I remember Cassidy had such a reputation with the docs and nurses at LPCH for being.......shall we say, very spirited! Riley has spunk and is a strong fighter for sure. He deserves to be as grumpy as he wants to be. I'm also glad to hear that he's getting a PICC line. That was a godsend for Cass. It sounds like the cardiac team is getting organized and starting to line up all the tests that need to be done right now. When will they take another stool sample to confirm the PLE??
I'm so glad that Carter got to enjoy a more "regular" schedule at home, although I am sure it was difficult for both Suzanne and him. Thanks for all the updates. I look forward to hearing what Dr. Tarnoff has to say, hopefully today. Take care of yourselves......
love,
Gwynne
It's great that Riley is perking up! I remember what a relief it was for us when Riley started being interested in food & games. As always, let us know if we can do anything.
So glad things are improving ! I hope you can all get some rest soon. I hope the meeting with the Doc gives you even more peace of mind.
Joce
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