Rylie was discharged from the hospital yesterday afternoon, and she seems to be feeling better. She had more pain than I had expected from the hernia repair. I don't know why I thought it would be so minor, but it was no picnic for Rylie Strong. I can't help but wonder if her lethargic state had something to do with being in the hospital again. She started to be more herself about 30 minutes after we got back to the Ronald McDonald House (we got a room there Monday!). Anyways, I haven't seen the incision yet, because we aren't supposed to take the bandage off until tomorrow. I'm really glad to have all her procedures over with, and I'm continuing to pray that Rylie's hernia repair will hold so we never need to do that again. I know it was minor compared to what Rylie has already been through, but seeing her in pain brings back too many bad memories that I had started to forget. Fortunately, she rallied for her tests today, and she is almost completely back to normal except maybe a little more tired due to all the travel and sedation.
We were happy to see Gracie, our little transplant friend who has Hurlers. She looks AWESOME! I couldn't believe how well she looks, and it was fun to actually have the girls together (since they didn't really get an opportunity to socialize during transplant recovery). I'll try to post some photos soon of their reunion. We also saw a few other friends, nurses, and staff. We aren't sure if Rylie remembers the people, but she definitely remembered the RMH and the play room at the clinic.
We'll let everyone know how Rylie's tests come back. We're anxious to start tapering the CSA (the drug that suppressed Ry's immune system) once we get the engraftment test back.
5 comments:
It's so good to hear you are home again and Rylie is recovery from her procedures! Love, Cousin Donna
We are praying everyday for you guys and it's good to have good news from you again. How is little Kamran doing? We hope you guys have a great anniversary! I wish we could be closer to celebrate with you :-) Someday we'll have a reunion. Julia
Julia, Kam is still hanging in there. They're trying to taper the ventilator this week. He may be off of it soon. The Graft vs. Host disease is very bad (he's bleeding in his gut), so we need to pray for a miracle for him and his family. Thanks so much for asking and for all your prayers.
Jade
We are so happy to hear how things are going and hope Rylie will continue to heal as hoped for from all her procedures. Esp. that "no fun" hernia.
I think we were setting up a rehearsal dinner five years ago. Glad you will be "at home" to celebrate your anniversary.
Take it easy as you look back on how far you've come!
love and prayers, L and B
I haven't tuned in for a few weeks so I was happy to see these updates! So encouraging! And Happy Anniversary to you guys!
Post a Comment