Whatever It Takes
19 Feb 2012 3 Comments
in Rylie Updates Tags: cystic, fibrosis, nebulizer, Pseudomonas, TOBI, tobramycin, treatment
It happened again. On a smaller scale this time, but still scary. Manageable, but still maddening.
Last Tuesday, a day before the one year anniversary of our doctor telling me my healthy 2-week old has a life-threatening disease, Kay called to say my healthy one-year old needs more treatment for her cystic fibrosis.
Rylie’s throat culture results showed a small amount of a bacteria called pseudomonas that can be particularly dangerous for Rylie’s lungs if left untreated. Thankfully, culturing pseudomonas is no longer the mark of decreased lung function but rather a more burdensome treatment regimen. An inhaled form of the antibiotic tobramycin, or TOBI, is the standard treatment for pseudomonas and has been perscribed to Rylie. The hope is that by treating pseudomonas early, we may be able to get rid of it after a cycle or two of treatment. One cycle is 28 days of TOBI twice a day and then 28 days off. We’ll repeat the cycle until Rylie’s throat culture comes back clear.
The downside of TOBI is that it adds 30 minutes twice a day to an already lengthy treatment regimen for Rylie. We have successfully finished 7 treatments… 49 more to go. She really is amazing. Her dad is too. Wednesday morning when Ryan and I were talking about the extra time that treatment will take and the challenges that it could bring for the next 28 days, Ryan interupted me and said, “We’ll figure it out. We’ll share the burden. We’ll hand off in the middle. We’ll do whatever it takes.”
And we will. Whatever it takes.
Feb 19, 2012 @ 15:01:28
We will keep Rylie and your family over the next 28 days.
She is a lucky gal to have the parents & grandparents that she does.
Hang in there!
Don & Alyce
Feb 20, 2012 @ 09:55:26
Dang Billie! I was bummed to hear she cultured psuedo. It is crazy that Riley, Jennica, and Reese all cultured it within the last few months! It is an extra treatment, but you get through it. The tough part is that you get to be off it for 28 days, so you get used to less treatments again…but then before you know it you are back on again. Our kids are troopers though, and it is amazing how well they handle it. I was excited to see Riley’s awesome weight gains. Jennica has came to a stand still, so I was presented with info on the g-tube at her last appt. We aren’t there yet, but it is on the table.
I am not sure if there is a min age for this compressor, or if you already have it but after Jennica was put on Tobi we got the Invacare Mobilaire Compressor. It speeds up treatment time a little. So maybe ask about that. Good luck! And hang in there! Thinking of you guys!
Jill Arp
Feb 20, 2012 @ 11:32:39
Thanks Jill!
I’m sorry Jennica’s weight as plateaued. G-tubes are another thing that scare me. I will be praying that Jennica’s weight can take off again so that you don’t have to go through all of that.
I’ve heard several talk about the Invacare Mobilaire Compressor – thank you for mentioning it! I think Ryan and I will look into it more. Who did you get yours through?
Is Jennica still on TOBI? I’ve been trying to master the art of reading while doing treatment with Rylie. Sometimes she lets me – and the time becomes a little more enjoyable. Although, this morning Rylie wanted to read books and the mask kept getting in the way of her pages. I think I need to look for little tiny paper books that would fit in her hands better. Maybe I could make some out of magazines. How does Jennica spend her time during treatment?