Day 13 and Counting

I know that some of you read my blog solely to follow Avery's progress and might be eager for an update. One would think that because I'm sitting in a hospital day after day that I'd have nothing but time to blog. Unfortunately, Avery has been VERY high maintenance lately, leaving very little time for blogging. The good news is things are looking up...at least I think so.

The last week has been difficult to say the least. Avery has been sick and in serious pain. It makes it hard that Avery doesn't talk and can't tell us exactly how he feels. It's really been a trial and error process to try to get him comfortable. His mouth and entire GI tract has been inflamed, so he went an entire week without taking anything by mouth. So, he's been getting tube feeds, but whenever they increase the rate of feeds, Avery gets more nauseated. He's had a few days of vomiting along the way, a couple of fevers, some seriously high blood pressures and heart rates that are just indicative of pain. He has rolled the bed literally moaning in pain for days. Or, possibly even more pitiful has been him sitting in his crib, rocking back and forth with his eyes shut moaning. The doctors have increased his morphine rate in his pain pump multiple times and tried other meds (nubane, ativan, dilaudid, phenergen, etc.) in addition to the other ten or twelve scheduled meds he's currently getting, but nothing seemed to really work.

Pretty much, the last week we have lived in the recliner. Avery has been a little more contented when he is being rocked, so Phillip and I have rocked him until our arms went numb. It has been mentally, physically, and emotionally exhausting. I have just had to lean on God for strength as well as my husband and family.

The bright spots have been that Avery's blood counts have been showing signs of engraftment, so they drew an engraftment study Tuesday. We should know in a couple of days whether or not the donor cells are working or not in a couple more days. The other positive is that Avery has been hinting at a smile a time or two in the last two days, and he ate 3 bites of applesauce yesterday.

I don't want to sound all gloom and doom; I'm so thankful that it appears Avery's cells are beginning to work. Avery's experience has been pretty normal...awful, but normal.

Our friends and family members have been so great through all of this! Everyday we get a phone call, text, or message of some sort letting us know that we're not forgotten and that we're being upheld in prayer. We've had so many people reach out in other ways to take off the extra financial stress of this time. Truly, our finances aren't our priority right now, but it is awesome to not be so worried about the toll Phillip's unpaid FMLA time is taking on our wallet. Saying "thank you" just doesn't seem enough.

Bethany