Our Time at Home

Helllloooo, sorry that we sort of disappeared for a few days! But I know many people are probably wondering what our time at home has been like.

So. It’s now been 6 days at home and so far we are surviving! Being at home with Adam has been easier and better than I anticipated it to be (who knew!). For those who read my previous post, you could probably tell how distraught I was about leaving the hospital. But since coming home, Adam has been sleeping and eating better, which means we have also been sleeping better. We realize now that being at home is so much healthier for Adam and it is also the best setting for an 8-month old baby to have some semblance of a “normal” life where he can continue to grow and thrive. The three of us have enjoyed every moment at home together. Every day we are constantly amazed and impressed by how much Adam has improved since his diagnosis 4 weeks ago.

Earlier this week since getting discharged, we went for a couple walks outside with Adam (it was cold!! California cold, that is…?) Good thing Grandma bought him this comfy little onesie, perfect for the cooler weather.

Adam seems back to his normal happy self now that he’s back at home. Rolling over, babbling a lot, eating well, trying solids, and trying to crawl. And I thiiiiiink I heard him say “mama” the other day ?. He was just starting to learn how to crawl before he got sick, so we’re hoping he’ll be able to pick that right up again too. Adam has eczema so Dad’s also making sure to keep up with Adam’s nail trimming so he doesn’t scratch himself. ☺

Regarding his eating…

Adam has been waking up twice in the middle of the night to feed. We think he might have gotten used to his stomach being full at night due to the pump feeds he used to receive in the hospital. So we’ve been waking up to feed him at midnight and 3:00 am. Even though our sleep is disrupted, we’re happy that he’s eating more. He’s been eating almost 25-27 ounces within a 24 hour period now! We hope that he continues to eat well, so that he can catch up with his weight gain and recover the nutrition he had lost the first few weeks of his diagnosis. The nutritionist’s goal for him was 34 ounces/day, so we are getting there! We started introducing solids right before he got sick and he didn’t take to it well.  We tried again this week and he still doesn’t seem to like anything other than breastmilk. But it looks like Adam may be sprouting his first 2 teeth! So, he’s going to have to learn to eat solid foods soon. ??

Regarding his meds…

He’s still fighting the meds every day, and he’s learned to keep his lips shut very tight (smart boy), so it’s been a challenge but we’ve managed to get it in his mouth one way or another, with minor spit ups. Thank you to some of our friends who have given us tips and creative ways to administer his meds. ? We’ve tried many things and every day has been a different experience. The important thing is that he’s getting the meds he needs. And we’re hoping that after tomorrow’s appointment with the oncologist we may be able to stop a couple of his meds which were supposed to be temporary, not long term.

Every morning we flush his central line so there are no clots. We have to give him a bath every day, and on Friday we had to do his dressing change for the first time by ourselves (once a week). We were leery about doing this on our own because it’s a sterile procedure in which we wear face masks, wash and sanitize our hands prior to and throughout the process, close all the windows and turn off any heater/ACs to avoid any movement of air/dust particles, and try to keep Adam as still as possible, for about 20 minutes. (A verrrrry long time to keep an infant still!) But he did so well!  Here’s a picture of his final dressing change. Voila! And for those who don’t know what his broviac (central line) looks like:

Tomorrow (Monday) is the BIG DAY, where we find out the news of his biopsy results, which would determine his ultimate prognosis. Though we have enjoyed our time at home, it has been a week of anxious waiting. Our appointment with the oncologist (outpatient) is scheduled for Monday at 4:00 pm. We will arrive at 3:00 pm to do some blood work first to make sure that Adam’s blood cell counts (specifically platelets) are stable and at a level where they need to be in order for him to begin chemo again. Adam would be starting his 2nd chemo cycle on Tuesday, and depending on the biopsy results, we may be readmitted to the hospital (if Stage 4, high risk) or continue with the chemo treatment as an outpatient (if Stage 4S, intermediate risk).

Please pray for tomorrow, regarding the biopsy results, and that Mark and I would not be too anxious. Our current prayer burdens are the same as previously posted. We trust in you, dear Lord Jesus, for the best outcome tomorrow.