Today brought some stormy weather to Minneapolis and to Rylie's room. We found out this morning that Rylie was ordered to have another CT scan. Our nerves are getting a little thin as we are ready to get out of here and news of more tests didn't sit well originally. The doctors explained the need for the scan since Rylie continues to have fevers even with her cell growth. If she has an infection, it may now show up on the scan since she has white blood cells fighting the infection. So it was back downstairs for another round of holding down arms and legs while Rylie was subjected to intense rays.
The results proved Rylie's small area of pneumonia in her left lung was much improved However, they found a small area of concern in her liver. Exactly what it is is not known yet. The doctors aren't sure if it is an infection or small blood flow blockage causing some damage. Fortunately, the area is very small and is not affecting any of her liver function. The doctors do not feel it is related to her mild case of VOD, but something else, possibly Hurler related. However, the doctors quite frankly don't know what to think of it yet. We pray this too shall pass.
After the CT Scan, Rylie had her 4th ERT post transplant. She will have four more weekly infusions. The reason for the post-transplant ERT is due to the fact that is takes a while for her to produce the alpha-L iduronidase enzyme on her own. The synthetic enzyme is hopefully doing the job for the time being.
This evening has been a flurry of activity with Rylie being the star. Jade and I returned from dinner to a waking Rylie with Granny B watching. This prompted a social visit to the hall (no more business trips like this afternoon please). The wagon was not available so Mom's arms and a paci under the mask did the trick. Upon returning to her room, Rylie played (on her own free will) longer than anytime in the last three weeks. She was smiling and talking to the nurses. It was such a welcome relief to see her feeling so much better. After returning to bed, she scarfed down six Cheerios! Real food!! After this mornings apparent setback and despite an unknown, it feels like Rylie took two big steps forward.
I'll close by saying that Rylie's counts were up again today: 3.2 WBC and 2.0 ANC!
Lyle
5 comments:
We're getting the storms almost daily here! my poor neglected yard..its angry with me, and as I continue to turn my back on it Im sure glad I did because 6 cheerios is worth another night with weeds :) Always praying, always smiling and always loving those numbers climbing with our little lady!
Yay for cheerios! I am so glad to see Rylie doing so well (and praying that the other unknowns are taken care of before you even have another worry about them).
We will be in town in 8 days and I can't wait to meet you all! Maybe Rylie and Gracie will both be out of the hospital while we are there.
Thanks for the update!
Kindall & Lauren
Wow, some great news about Rylie's counts, energy, and eating! Keep us posted on the liver question, and we hope it's nothing worrisome.
Those are wonderful numbers Rylie.
We're glad to hear you are feeling a little better and playing and eating cheerios.
Keep up the good work. We're praying for you!
Love,
Gracie's Noni & Munts
Keep up the good work, Rylie! We're rooting you on! Can't wait to see you in that wagon! We'll continue to pray that no infection develops. It sure would be nice to know what's causing the fevers though. I'm glad to hear that you guys got to go out to dinner together! I drove by your house yesterday and everything looks great!
Take care,
Jenny
Post a Comment