Monday, January 3, 2011

Welcome 2011 and IVIG



Yes it is a brand new year and I'm telling myself to be positive that it will be a GREAT year. We definitely have a lot of exciting stuff happening this year.

We definitely rang in the new year with a bang.....I was asleep by 10! :) Doesn't mean miss Haven let me sleep for too long but I did try.

We did finish the year with two great movies - Gulliver's Travels and TRON. Haven really enjoyed them but liked Gulliver's Travels more. We had a wonderful Korean New Years dinner at Grandma and Grandpa's house.

Haven was scheduled to go in for her chemo boost on January 3rd. She's had a pretty good cough since the beginning of November that seemed to taper with her last dose of IVIG. But it came back right at the holidays. So we were anxious to get in to Oncology - especially after talking with Pulmonary and her pediatrician during the holidays.

This is a photo of Haven's port while it is being accessed for chemo. She has had this cath-o-port since her first surgery in Feb. 2008. She had two ports at one time and thankfully the Hickman line was removed (which was the other side of her chest). She was a bit sad to miss the first day back to school - she couldn't wait to get in and see Mrs. Petz and her friends. Plus the constant reminder to get her birthday invitations ready this coming weekend.

These are the "tubies" that connect in to her port to give her the medicine.

As you can see to the right of the photo - Haven won a prize yesterday from one of the nurses. She used a thermometer under her tongue for the first time EVER! So this was a major deal. She usually has it put under her arm. Why she can go through multiple surgeries, tests, scans, chemo and not be able to put it under her tongue is the Haven mystery, as she would say.

Haven also had a chest x-ray which we are waiting to hear if anything comes of it. At this point it's been almost 24 hours so I doubt anything is wrong. We have a prescription for her from her doctor but we are waiting a few days to see if the IVIG helps. Her Oncologist says this isn't how IVIG works but as parents we noticed a difference on the last dose. She did sleep ALL night last night - first time in 3 weeks. So if it is IVIG then I like IVIG because I get to sleep!

We also have an appointment set up with the ENT on February 1st. I'm still waiting for the call back from Pulmonary to have Haven fitted for a cpap. At least as a temporary check. We want to do 2 weeks to see if there is any improvement - if not then we will discuss discontinuing this with her doctors.

We hope everyone had a safe and happy new year! Bring on 2011

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