Surprises

How’s this for a surprise…ETHAN’S HOME! Yes, Ethan is at home, currently playing squirt guns on the porch!

Monday he had an abdominal, chest and head CT scan. We heard no results until Tuesday morning. This CT was the one that would guide the radiologists during the lung biopsy / lung resection (removing part of the lung) on Tuesday or Wednesday. Needless to say, I was a bit stressed Monday night, not hearing results of the scan, not knowing whether the biopsy would be Tuesday or Wednesday…feeling completely in the dark.

Tuesday morning his nurse comes in after her daily meeting with the docs, and says they are talking about Ethan going home, and that he could go home that day, Tuesday. She informed them discharging a patient after 3 months in the hospital doesn’t happen in a day. So, they were talking about Wednesday.

We spent the day Tuesday packing, learning about the pumps we’d use at home to give meds, etc. Wednesday afternoon, we arrived home.

Ethan has a lot of recovering to do. Home is the best spot for this. Quick health summary: while his lung is still very damaged from the pneumonia, it’s clearing up “very nicely”. It still looks really bad, but they never thought he’d make this much progress in this amount of time. He’s still on antibiotics for it, and will continue to be “until he’s 40″, so the docs say…a slight exaggeration, but we get the picture. He’s not ready to go to transplant right now, or next week, but they don’t want to give him another round of chemo either. So, the plan is to send him back in for hospital admission on August 10 for the bone marrow transplant. A week of “conditioning” (chemo and radiation) would occur, and then transplant day would be on Friday, August 17. This is the plan, as far as plans go, we’ve learned how fast they can change. Not-so-good results from a bone marrow aspirate next week could change plans…please pray for GOOD results!

He’ll be back in the hospital/clinic at least 2 times next week (Wed and Thur) for exams, blood tests, OR to receive a central line, bone marrow aspirate. Lots to do, but he can sleep at home for 16 sleeps! His legs are like bird legs, so fragile and weak. And while his immune system is slowly building back up, we’re sheltering him as much as possible, to keep him healthy, and avoid unnecessary germs. We’re at home, being very low-key, trying to build his little frail body back up, before it gets run down again in 2 1/2 weeks.

5K on SATURDAY!: We’re looking forward to the 5K on Saturday in Rowley. Ethan asked the docs last week if he could go to it, and yes, they granted his wish. He will most likely make an appearance, and the plan is for him to be with Eliot in the jogging stroller, while mom, dad and Em, Grandma and so many others walk the 5K…notice I said walk …But we’re being flexible, depending on how he’s feeling, weather, etc… Em’s been training on the treadmill, walking 2-3 miles every day. Wish I had .

Ethan receives meds regularly at home, throughout the day and into the late night. He continues to receive his nightly NG tube feedings. He’s managing to eat and drink throughout the day now, not much, but more and more every day.

We are all so thankful for everything that everyone continues to do, from bringing dinners, to planning events, reading/checking the blog daily (or at least whenever I get to update it), phone calls, care packages that light up Ethan’s eyes for the whole day, etc. Thank you, we’re so lucky to have friends and family like you. So, while we try to get Ethan recovered as best as we can, make him stronger and healthier and home, please don’t take it personally that we’re not having big get-togethers, parties, play dates, soirées, etc…We’ll keep you all posted on his progress, and we continue to think of you all, as you have so wonderfully kept us in your thoughts and prayers.