5/12/19 Budesonide Goes Off

Life for Reese continues to be on an upward trend, something we are grateful for everyday. She continues to go to school as many days a week as she can, when she is not at doctor appointments. This coming week, she has the potential to attend three days, and she loves it! Last Friday was Grandparents Day at Sacred Heart… something I don’t remember from last year. My parents went with Quinn, it was during Reese’s VOD stage which involved the PICU, so I don’t even remember hearing about it. But, what a joy, both girls were able to celebrate this year!!

If you have followed Reese for awhile you are used to the word ALBUMIN. Something you will (hopefully) never hear about anywhere else in life. Well, it was hanging out in the mid 1s the past few months… and then upon arrival home it started climbing… 2.2, 2.6, 2.8, and this week, 3.1. And 3.3 is normal range, she is so close!!! We celebrate each step up, and I am especially ecstatic that it is such a gradual and consistent climb. We can see Reese healing by looking in her eyes. Literally, seeing the swelling going down in her face has been very exciting. It seems especially dramatic this week, which could be a combination of good albumin as well as the taper of budesonide (gut steroid) that we are doing right now. This isn’t supposed to absorb and get into Reese’s blood stream, but we know it does. If all goes according to plan, this will be off THIS WEEK! That’s one more immunosuppressant OFF, God is Good!! Buh-bye steroid. Reese will remain on her physiological oral dose of hydrocortisone until endo checks her adrenal glands again… this is in July. Basically, they are giving her the amount of hydrocortisone that our bodies make naturally, because hers doesn’t. (While a physiological dose of hydrocortisone IS steroids, it’s not bad, it’s just what we have naturally anyway.) Because Reese was on high dose steroids for so long, her adrenal glands shut down. The hope is that they will start back up again, that is why they will be tested in July. (They failed this testing in March.) Sometimes they don’t, we pray that Reese’s do!!

Reese has a consult with dermatology on Thursday. We are hoping they will give us a little insight on the “rash” on Reese’s face. It has been there, in some form, for a few months. We are now treating it with hydrocortisone ointment and it’s WORKING. So, what does that mean, that this medicine helps? I’m not sure, the words skin gvhd have been used but we will see what derm thinks. Either way, it’s mild, covering only a small area, and we are beyond thankful for this fact.

While we were inpatient, Reese and I had a phrase that we used often. Multiple times a day, actually.
“Get it over with.”
There were many things that were unpleasant that Reese had to do. Everything from bathing on a cold, hard bathroom floor to insulin shots to NG tubes being pushed down her nose to eye tests with dilation, scan after scan… you get the idea. It was constant. At the very beginning, right at diagnosis, I told Reese a story about myself, and how I like to get bad stuff over with. I like to put these things in the rear view mirror as quickly as possible because… well, then they are in the past. Over, gone. And I don’t have to think about them. Reese loved this idea, and it became out mantra for months. Sad, but effective and true. We wished away hours, days, so many happenings, and focused on getting it over with. Time. Sweet time. Tonight, I sat down after the girls’ bedtime, and I wished I could repeat the past two days. I wish I could spend more time marveling at my beautiful family and the moments of joy we had, there were a lot of them this weekend. That’s when it hit me, hard. I have the gift of longing for more moments in the day. How blessed am I, to have too many GREAT moments to count? Reese doesn’t use those words anymore, she doesn’t wish days away. We have everything from the giggles on, just… life. We can celebrate the beauty of loving what we have, because it’s ours, and we wouldn’t think to wish it away. Or get it over with. That’s powerful.
So to all of the amazing moms I know, happy Mother’s Day to you. Today, I wish you the gift of peace, of recognizing extraordinary moments that you want to hold onto, because life is that good!

Leave a Reply

Your email address will not be published. Required fields are marked *