Y’all. On most days I am a fairly laid back and patient person. Admittedly, I get flustered easily but, then I get over it and deal with it quickly.
Today. Is not one of those days.
As you know, we got moved back over to OCH rehab last Friday. It’s been a HUUUUGE ordeal for 2 months with us going back and forth for seemingly no reason other than because insurance wants us to move EVEN though Soph is a fragile cancer patient. I’ve thought all along that moving her so much is not good for her but, that’s neither here nor there-nothing I can do about it now. And let me add that we LOVED her therapists over at OCH! Zach, Laura, and Lindsey were incredible with Sophie and would get her to make HUGE progress if that had the time. But right now-we can’t just focus on therapy!! We still have to tackle transplant! After tha I’ll be happy to live in a rehab facility as long as necessary but, for now…she’s still a cancer patient! [[Stepping off soapbox]]
It’s just hugely frustrating to feel like insurance companies see your most beloved and cherished baby as a name on a piece of paper and not a 2 year old that shouldn’t be moved around once a week.
But I’m not bitter. 🙂 AND my child is cancer free so let’s just hold onto that positivity!
Ok-so now that I’m done ranting-here’s an update on Soph:
Ever since Monday evening she has been having these very odd pain episodes. She’ll wake up out of a dead sleep crying out in pain. The pain lasts about 30 seconds then she calms down and is fine. We also started noticing some redness, swelling, tenderness, and oozing at her G Button suture sites. So the combination of all of that prompted us loading up in an ambulance and heading back to Children’s.
Woundcare came by and examined her suture sites. It looks like just a topical skin infection of the suture sites. Nothing is wrong with her G-Button praise the Lord! She is on IV antibiotics and getting antibiotic cream put on the site 3 times a day. She hasn’t had any fever which is good-we caught it early and it should clear up in a few days.
As for the pain, all of her blood and urine cultures have come back normal. All of her blood counts are great. Her white cells are actually performing like they are SUPPOSED to finally! On paper she’s fine. So for now, she will get the IV antibiotics, fluids, and pain meds as needed and we’ll see how she is over the weekend. We should *hopefully* be loading up and heading to Cook’s Monday or Tuesday as long as her belly looks better.
So-nothing crazy emergent but, still needing prayers.
1. Pray the antibiotics work quickly on her G-Button!
2. Pray that whatever this pain is that it just goes away or we figure out what it is!
3. Pray that our trip to Cook’s is still on for Monday or Tuesday-we just need to get to Cook’s!!!
4. Thank you Lord that we at least know none of this is her cancer! That we know she’s cancer free and that it’s one less thing on the list!
5. Pray for her body to be protected and sustained as we go into transplant!
6. Continue to pray that she stays cancer free forever and that her nerve and brain damage gets better every day!