Going Home

 It's been a rollercoaster week, but we have an exciting update!

Aaron is going home tomorrow! The plan wasn't final until this morning - there was a lot of back and forth about whether it would be this week or next - but as of right now, the plan is for discharge tomorrow (Saturday) which will be Day +30.

Isaac and I spent the day getting training on ALL the things we need to know to take him home. He will still have his central line as well as his feeding tube in place, so we had to learn how to take care of those. We had to learn how to use the feeding pump so we can give him feeds. I also got an extensive run down on his meds - we get a whole updated spreadsheet every week. It's a lot to take in, but I'm encouraged to remember that it although feels completely overwhelming now, but it will get easier as we go. We've done it before and we can do it again.

Unfortunately, Aaron had a bit of a rough day today. His feeding tube got clogged last night, which led to no overnight feed. He woke up in the morning, took his meds on an empty stomach and promptly threw them all back up. (Sorry TMI) So he's been a little off today - not feeling great and kind of bummed at having such a tough day. He ended up getting the feeding tube replaced this afternoon and he did great. But he's asleep now, likely just overwhelmed from the intensity of the day.

Apart from that, he's had a good week. He's been eating more and generally has had more energy. He completed three giant Lego sets this week alone. His ANC has been steadily climbing and we've even seen a small bump in his hemoglobin on his own as well. All signs are pointing to his body making lots of cells and doing its best to regrow an immune system, essentially from scratch.

Enjoying a Harry Potter Patronus Lego set and some fries.

Walking with no IV pole for the first time in 4 weeks!

Truthfully, we're a little anxious about going home. It feels abrupt, but I guess that's the difference between a 38 day stay and a 100 day stay like last time :) His platelets are not really cooperating how we'd like - which is why we weren't sure we'd be going home so soon - so that's a little nerve wracking as well. The doctors have assured us that he's doing well and they think he's ready to go, in spite of low platelets. He'll get a transfusion tomorrow morning before we go to bump his numbers up a bit before we go. Thankfully, he already has his weekly clinic appointment scheduled for bright and early on Tuesday morning so we really only have to navigate two days at home before we see the doctors again.

For the next few weeks, he'll likely go to clinic twice a week, assuming that he'll still need platelet transfusions regularly for awhile. After his platelets start to normalize, we'll drop down to one clinic visit a week for the rest of the summer. If all goes well and he's still making progress by Day 100, he'll start to decrease his clinic visits to every other week, then monthly. We'll continue with clinic visits for the next year after that. 

We've been told that it's really common to end up back in the hospital a time or two (hopefully not more than that) over the next several months. We have so many precautions to follow and they take everything really seriously, so we'll come back immediately if he has any bleeding, fevers or signs of complications. It's been great to get the education, but also completely overwhelming. It's a lot to take in. It feels exactly like that first car ride home with your newborn baby. Like, are you sure I'm qualified for this?? Can we sneak a nurse along in the trunk??

I'm trying to remind myself that we've gotten this far by taking it one day at a time, and that's what we'll have to continue to do. Just one day, one step at a time...and eventually we'll be able to look back to see how far we've come and all of God's kindness and faithfulness along the way. It's been true up until now and we are trusting the same for the future.

In the meantime, we still need a lot of prayer! Please pray:

  • For Aaron to get a good dose of platelets before we leave tomorrow to carry him safely through until clinic on Tuesday.
  • For his platelets to begin to rise on his own so he doesn't need more transfusions.
  • That he wouldn't have any fevers or infections while we're home and no complications from his central line.
  • For everyone to stay healthy and well at home to prevent Aaron from getting sick.
  • For continued progress on growing new and healthy cells, without any signs of rejection or GVHD complications.
  • For Aaron to begin to eat normally so we can get rid of the feeding tube sooner rather than later.
  • For a seamless transition home - for everyone! It'll be an exhausting day for Aaron and emotionally overwhelming for the rest of us. Isaac and I have to build a whole new schedule at home and it feels a little daunting right now.

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