Taking the Good with the Bad

Not much to do here

Hey friends, family, and people who've heard our story! Just wanted to give you an awesome update, and unfortunately, it's coupled with some not so awesome information. Awesomeness first: We have a transplant date (FINALLY)! Oakley has reached his 6 KG goal (he got up to 13 lbs, 4 oz)! The doctor finally gave him a date and he is set to start chemotherapy or conditioning, on the 23rd of this month, with day zero, or transplant date of October 29th. They will be doing a 5 day conditioning regiment, 1 day of rest, and then the transplant. We are so excited to actually have the ball start rolling, so we can count the days until we can take him out of the hospital. I cannot wait until he can feel grass on his little feet, see a bird-even if it is a crow or a pigeon, and pet a dog! There aren't service dogs in the bone marrow transplant ward, and there won't be any in the apartment that we'll be staying in once we're outpatient, so I don't know if we'll just wait until we go home to Boise and he will see his dog for the first dog experience, or if we'll have to sneak him a dog to pet beforehand. I also can't wait until he's outpatient so we can live as a family, in the apartment for the first time. Trevor and I stay at the hospital with Oakley, so it's almost like we're living together, but it's going to be so awesome to not have people coming in every 1-2 hours to do things that Trevor and I could honestly do ourselves.

taking a quick breather at Lake Washington

I would venture to say that we are much better at blood sugar checks than the nursing staff here, and we are able to interpret the results and the necessary steps to ensure he stays in a good range or gets to a good range. Trevor has hospitalitis. He is starting to resent and loathe the nursing staff here. I can understand it, because several of them seem to be inept, but they are trying. If you've ever had kids, you may remember how everybody wants to give you parenting advice, and that for some reason, they think their idea is unique and amazing, even if it's something you've already been doing. Our experience with the nursing staff here is just like that, but several times a day. It gives us something to talk about though. For instance, Oakley has been on med pumps since day 1. Med pumps alarm when: there's an obstruction (like a kink in the hose, or if you roll the wheel over the tubing, or if it's clamped) when it's supposed to be running, the battery is low, there's no more medicine left in the syringe or in the bag (meaning the infusion is complete), or if you set the med to go for 150 mL and you need to reset it to keep going. Trevor and I are very comfortable with these alarms, and are capable of silencing the pumps because sometimes the nurses are busy when they go off. We can even restart the pump if it gets an obstruction, and we fix it. I could even shut the pump off when the med is done, but I shouldn't, because I'm not a nurse. Despite all of this, our nurse yesterday told us that we shouldn't worry if the pump starts to go off, because it's just one of his medicines beeping. We were surely wearing our irritation on our faces, but just said, "Yeah, the tacrolimus." The tacrolimus goes off everyday, and has for about 3 or 4 months now. We're pretty familiar with what time he receives it, and that the pump alarms when it's done running. For the rest of the day, Trevor and I joked about this (and other remarks the nurse had made that were very common knowledge for us) for the rest of the day. Hey, did you know you're not supposed to leave your baby face down in a tub of water? Did you know you're not supposed to put plastic bags over their faces? No, of course we didn't know that...bummer, I had a whole stash of Walmart bags sitting at home for Oakley to play with. (Obviously we're sarcastic about this, don't call CPS)

Sorry for meandering, because that's actually not the bummer news. There are two real bummers, the first one is that the TGI Fridays bartender competition that was going to benefit us by giving us the proceeds is now called off. Apparently, one of the two ladies running the charity night quit her job, and the other one had a family emergency is on leave. These two were so involved, that the rest of the folks at TGI Fridays didn't even know how to get in touch with us to let us know. My parents went to lunch there Sunday, to support them since they were going to be supporting us, and they found out about it. I'm planning on getting back in touch with the manager who is still there this week, so I can find out if they're just postponing it, or if it's completely off.

The second is, I finally lost my job. I have been on a leave of absence for my own medical issues (which still persist...I have 5 doctor appointments this week alone), and because I have been out of the workplace for so long, they had to let me go. I am super bummed, not only because our family will sorely miss the insurance that T-Mobile provided, but because all the benefits were awesome. I liked my job, had been there for over 5 years, and will miss it. I will also miss the awesomely cheap cell phone plan and getting my new phone every year for free! I am re-hirable, so I will go back to work there once things quiet down-assuming we've got things figured out for Oakley.

We're trying to figure things out, to see how to make life work for now, but in the meantime, I'm learning to figure out the shuttles so we don't have to pay for gas (it's over $4 per gallon here!), and to avoid allowing my car the opportunities for mechanical failures.

Keep us in your thoughts and prayers, as we enter the rigors of pre-conditioning, chemo, and the transplant process. I especially hope that you pray for our mental well-being, as it's taxing being isolated from the world, and we are under tremendous amounts of stress, and for Oakley to continue to gain weight, and keep up his appetite during the conditioning and transplant processes.