Max was discharged from the hospital this weekend and will now be seen as an out-patient everyday this week. He did really well after removing the epidural and transferring to oral pain meds so that we can administer those at home. He also did really well after taking out all the tubes and monitors.
We are settling in at home as much as is possible. It's really nice to all be at home at the same time, since it has been two weeks of at least half of us living at the hospitals. Max is doing well and is enjoying being with his sisters and playing with his toys. He does get really frustrated because he wants to do the things that he use to be able to to and now can't. We hope to have occupational and physical therapists out to our house this week to help us work with Max and baby proof our house again. We are also having a hard time keeping him hydrated, for some reason the function that controls his electrolyte balance is off. We are hoping we can get this figured out soon or else we will need to have him admitted again for iv hydration.
Kari and Max will be meeting with all of the specialists that will follow Max to get a baseline of where he is at now before chemo starts so that we can look for progress as we begin treatment . We should find out more results about the pathology of the tumor, bone marrow biopsies and the surrounding lymph nodes today. Max's tumor will be discussed at the Tumor board on Tuesday. Max has two more important tests that need to be completed before staging can be complete. He has an LP and an MIBG scan on Thursday. The MIBG will show other cancerous "hot spots" in his body. Max had a bad reaction to the anesthesia used during his bone scan before we were discharged so we will pray that he can make it through these tests without any problems. They have decided to wait until Friday to do the chemo to give his little body a chance to heal a little more from the surgery before they knock him down again. It will be an 8-9 hour infusion through the port in his chest. Again, how do you keep an 18 month old still for 8-9 hours??
Let me re-post this, I was thanking Kari and Josh and Zee Blog Queen for keeping us up to date. So much easier to keep praying when you know current needs and answers too!
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