Progress Reports
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Thursday, March 11th, 2010Sam ’s got several different lines and every day I untangle the dilaudid drip from the saline or now the TPN and the oxygen line that somehow manages to sneak it’s way in there. Unfortunately after checking the pumps and pausing them for mirapenum and other infusions all day they are completely snarled again by the following day. It’s similar [...]
Bonescan Today
Friday, March 5th, 2010I am sitting in clinic watching a sleeping Sam waiting to go to Nucmed for a bonescan. We are doing a bonescan in preparation for a possible samarium infusion at UCSD. It’s a radiation treatment. Sam would be the second kid to try it from Rady’s, the first patient had great success although she wasn’t [...]
Doing ok!
Sunday, February 28th, 2010Quick update and we apologize for the lack of information. Sam completed radiation to the liver Wed and to the skull on Friday. Liver numbers are dropping. For the other NB parents, AST/ALT, Bili are basically normal - GGT is down by half but still elevated. It’s a good tumor marker [...]
Project Management
Saturday, February 20th, 2010Sam came home yesterday afternoon and as usual all of our moods brightened quite a bit. He is on a pain pump and fluids. It was kind of funny because he wanted to make what is becoming our traditional Toys R Us stop on the way home from the hospital and I was trying to [...]
Yesterday Sucked but today is better
Thursday, February 18th, 2010We are working on getting Sam discharged. He spent a couple of days in the ICU because his sodium levels were dropping and the only place to get highly salienated fluids is in the ICU. It made us really appreciate the Hem/Onc ward though we did have one rock star nurse who was great. Not our Sheila The [...]
Globetrotters and Valentines
Sunday, February 14th, 2010Sam almost made it to his Valentine’s Day party on Thursday but started feeling pretty cruddy about an hour before we were going to go. He wrote out all of his Valentine’s the night before. He loves to do that. I dropped them off to his class and picked up a huge bag stuffed for him and Ms. [...]
Radiate
Wednesday, February 10th, 2010The title of today’s post has two meanings. Erik Ludwinski passed away last night. His mother Donna has been our friend and support since we started this journey and Erik has been an inspiration and an example to nearly every NB family. Sam and I were able to have dinner ( a 10pm dinner) with [...]
Home Again Home Again Jiggety Jog
Wednesday, February 3rd, 2010Just a quick update to say that Sam walked (albeit slowly) out of the hospital this afternoon after they discharged us. His fever and neuropathic pain has resolved for the most part and we are all now home again together. I feel a little bit like we’ve been on a yo yo hospital stay lately [...]
OK and BMX and much later ER
Tuesday, February 2nd, 2010Charlie will proudly tell you that he can spell both OK and BMX.
Sam had a pretty good week last week. He didn’t have any break through pain that was not controllable and slept through the nights and was generally up and around. He’s on 20mg oxycontin twice a day. He got platelets on Tuesday (11) and Friday [...]
HAPPY BOYS
Sunday, January 24th, 2010Sam came home yesterday afternoon. Thank you nurse Sheila for working so hard to get us out of there. The boys were so happy to see each other yesterday afternoon. Neil brought Andy and Charlie out to meet the car. Andy said earlier in the morning, “I’m going to be so happy to see Sam [...]
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