Hallelujah

As you all know by now, WE’RE HOME…Hallelujah!

We’re loving being home, being together, while at the same time adjusting to our new routine, or perhaps trying to establish a routine would be a more appropriate thing to say. However, most importantly, Ethan is doing well. He’s thriving being home. Everyday is better, he’s better, stronger, healthier, eating more, drinking more, more energy…

Rewind…two weeks ago…RASH! Turns out, it was a drug rash (a reaction to one of his meds). While they don’t have a conclusive decision, the docs are rather certain it was an antibiotic he was on, Meropenem. Ethan had been on this drug since the beginning of July. So why does it start causing a rash in September? The rash formed at the time Eliot’s cells started producing cells for Ethan, at the time of engraftment. This suggests that Eliot’s cells do not like Meropenem, and that Eliot is probably allergic to the drug. Once this was realized, the docs switched from Meropenem to a comparable antibiotic that Ethan seems to do fine with now. Another interesting tid-bit is that Ethan’s blood type of A+ will be changing over the next few months to A-, Eliot’s blood type. Fascinating!

Now that Ethan is at home, he’s treated in Boston at the Jimmy Fund Clinic, located at Dana Farber. We came home last Wednesday, and were in clinic on Friday. Our appointments are always at 8 or 8:30 am, so we leave early on those day. This week we went in on Monday and Wednesday. Friday we have to go in again, but for a very quick visit, only a blood draw to test his medicine levels in his blood. The clinic visits are for checking vital signs, blood draws/labs to test med levels, other blood levels, see if he needs transfusions of any sorts, etc. They typically last for 3 hours, and we spend that time in an separate exam room, of our own, so that Ethan stays isolated. There is a TV/DVD/VCR, potty/sink, bed, etc, so we have everything we need in the room. Emma has come a couple times with us, and spent her time doing work. Grandma Mary is still here, so she has stayed with Eliot at home during our Clinic visits. Next week, Daddy will start to take one day / week off, so that he can either stay at home with Eliot/Em, or take Ethan in to Clinic. Wednesday will be our day to go in, as that is the day Ethan’s primary doctor is at the clinic. We will fall into this weekly routine for quite some time, and then perhaps in a month or two, our visits clinic visits will go down to every other week.

I could compare our days at home to the first days at home with your first newborn, or with any newborn for that matter…hours filled with how do I do this, what’s the best way to do that, what do I do now, can I do this, I’ve never done this before…? These days could also be compared to a juggling act, trying to effectively manage and parent three children, two of which I haven’t seen for a month, or lived with for 5 months, one of which is a high maintenance 5 year old, who is used to one-on-one attention for the past half-year. It’s wonderful being home though…we’re so thankful that this day has come.

Ethan is on many several meds: oral meds, IV meds, IV fluid at night. There is a constant process of prepping meds, administering meds, disconnecting, reconnecting, etc. Working the rest of our day around these mandatory tasks is not so much challenging, but cumbersome, and makes for a very constant flow of tasks, with little time for rest. Ethan has fallen into the routine of fighting all oral meds, so what could be an easy task is not so easy.

OUR NEXT YEAR: We’re at home now, and don’t have plans to go anywhere. If Ethan did get a fever, it “buys us a ticket back to the hospital”, so they say. And he will get a fever at some point…so we have to be prepared to go back for at least 48 hours when this happens.

Being home comes with many restrictions for Ethan, and us. Of course Ethan can not go to school, stores, restaurants, public places, any crowded areas, etc. In addition, we can not have anyone into our house for the next year, only our immediate family: Daddy, Mommy, Em, Ethan, Eliot and Grandma. We had Grandma Mary formally written into Ethan’s transplant plan and defined as “immediate family”, as she has been our constant caregiver and in our home for so many months now.

Ethan can go outside, play, hike, etc. Rustling leaves, playing in dirt and sandboxes is bad, so nothing too dirty/dusty. He has sat in the child seat on the back of Yancy’s bike and they have gone on a few bike rides. He doesn’t have the stamina yet to ride his own bike. He walks around well, yet still has a slight hobble – weak legs. As restrictions are lifted many months down the road, Ethan can visit with people outside. Visiting with friends his age will pose challenges, as we will have to ensure they aren’t coming in close contact. Maybe a bike ride or a gentle hike will be most appropriate. We’ll cross that bridge when we come to it. Visting with adults outside will be much easier, as they understand and adhere to the “rules”.

While we have made the choice to home school Emma in hopes of minimizing exposure to germs/sickness, this doesn’t mean we’re confining her to our home for a year. She’s started soccer, will be starting tennis, and thankfully had her first play date yesterday! She does miss school, and she does miss her friends. So my goal over the next few weeks is to get her into a routine with home school, activities, and seeing her friends. She will have to go over to her friends’ houses, as we can not have them over here in our house. We will just try to ensure that wherever she goes is a “healthy house”, where no one is currently sick or has been sick. To me, this is an uncomfortable question to ask, but we must ask it for a good reason…we’ll get used to it, and we know everyone understands our reasons for asking.

This has taken 3 hours to write, with unlimited interruptions. Another goal of mine is to fit posting a blog entry into my daily routine. Bear with me, as this might take awile. Slowly, we’re getting there…thanks for hanging in there with us!