Monday, December 5, 2011

Last Wednesday, Collin's ANC was up to 4,000 because of the GCSF, so after he had a platelet transfusion early that afternoon, we were allowed to go home. He is on IV antibiotics through December 10, which means he came home with his port still accessed. Wednesday evening, we received the large pharmacy delivery of the antibiotics, saline and heparin syringes, and other supplies like a sharps container, dressing change kits, and more needles for the mediport. We also had a visit that evening from a home nurse who set up Collin's case file and made sure I knew how to administer the IV antibiotics. The needle that accesses the mediport must be changed every seven days, so the nurse came back Friday morning to change the needle and draw blood for labwork. Friday night when I hooked up the antibiotic, I had quite a bit of difficulty flushing saline through the IV line, and then the antibiotic wouldn't infuse. So the nurse came back around midnight and changed the needle in the port again. As much as I hated the broviac line when Collin first had it, I found myself wishing we still had it so we could avoid sticking needles in his port so much. Even though we use Lidocaine cream to numb the area first, Collin has figured out what we're doing, and of course he doesn't like it. He's still very good about it, way better than I would be, but I hate having to see him go through such things.

The IV antibiotics are given twice a day, and each infusion takes 60-90 minutes. The IV Cipro is in a small balloon which is inside a pressurized bulb that gets hooked up to the IV line that is connected to the mediport in Collin's chest. The pressure in the bulb slowly pushes the medication out of the balloon and through the IV line. It's a neat system, it's easy to do and is pretty portable, so I can take the morning dose along to therapy appointments if necessary. The evening dose is administered after Collin is asleep, but luckily it can be given without having to wake him up.

This is what the bulb looks like before it is used; I started with 21 of these in my fridge:



This is what it looks like when the infusion is complete:



This is what I came up with so Collin could be mobile during the infusion without me having to follow him around holding the bulb for an hour or more.



Collin is always clingy for the first few days back at home, probably for a variety of reasons: he may not feel too great, he's tired, he's had a change in environment, and he's had my undivided attention 24/7 while in the hospital. I always have lots of things to do when we get home: unpack, catch up on laundry, housecleaning, coordinating any new appointments we need to add to the calendar, etc. It makes for some stressful days because I just want to get things done, and Collin just wants constant attention. I know time with him and the rest of the family is the most important thing, but I'm much calmer and function better if I feel like I have things in order.  

By Saturday I felt like I had accomplished a lot, so we spent the day putting up the Christmas tree, and Sunday we put together our latest Christmas LEGO set. Now I feel like I'm caught up on the most pressing things on my list, and I can try to tackle other things as I get the chance. Collin seems to be feeling better over the last two days, and is eating a bit more as well. Friday's labwork showed his ANC to be back down at 700 since the GCSF was stopped, so he's not leaving the house unless it's to go to an appointment. He has therapy tomorrow, and an MRI Friday morning. Scanxiety has set in, and I am very nervous. Friday afternoon we will be meeting with the oncologist, a neurosurgeon and a radiation therapist to review the MRI results and figure out what comes next. Please pray that the chemo has at least shrunk the new nodule that was found on October 26, and that we make the right decisions about what the next step will be.