Today was fairly exhausting and emotional with an overtired toddler. Selene didn't nap yesterday, went to bed late, slept poorly (I'll be sad when I can't push a button and have a nurse pump Ativan into her IV when we go home.), then didn't nap today. So she was a bit moody.
That also meant it was the day that we had both PT and OT, both by fill-ins, thus people Selene didn't know. So she was slow to warm up. Though when I apologized to the Occupational Therapist for her bad mood she replied with "Um, I was about to thank Miss. Jen for letting me come play with this sweetie, so if this is grumpy, I can't imagine a good mood!"
Oh, before I go on! Her numbers continue to go up! Her ANC was just 240, but it was up 7 and not down! Which meant we got to ditch one of the antibiotics today. And everything else was a little higher. Praise the Lord for this progress!
We then had our meeting with the outpatient Nurse Practitioner. And while I knew all of the quarantine rules before, hearing them out loud made it a bit overwhelming. I will say there were two big things that threw me. One, is that the "Don't go anywhere rule" applies to Nana and Grandad's house, even though they live 10 minutes away and have a clean house, and come to our house not wearing masks. And that we shouldn't go to my parent's for a year! Because of the 4 hour drive and the need to be able to be within an hour of a good hospital in case of any fever.
The other big one is that she said there shouldn't be a problem with Ainsley going to school! We were shocked. I asked her four times to confirm this. Miss Mitchell, if you read this before I email you, woah!
Here's a brief outline just in case you are interested.
-We go no where but home, outside and ONCO clinic for 4 months.
-When we are home, visitors wear masks. At clinic, Selene wears the mask (until she's in a room then the docs will wear the mask to give her a break).
-No more than 3 visitors at a time, in our home (all wearing masks).
-She is to be around no one who is unvaccinated or children under 3 as their regimen is incomplete, for one year. (new baby is given a bye and is able to receive all of her vaccines on schedule).
-At the 3 month mark, masks can cease.
-No swimming in public pools, oceans, lakes, etc. for 1 year (private pools are fine).
-No digging in dirt, sand, etc. Sprinklers and water tables are ok.
-At a fever of 101.5, we go straight to CHOP. At least this threshold is much higher than her neutropenic 100.4
-At 4 months we can go to uncrowded places at uncrowded times.
-The sun is bad! It can actually activate GVHD (graft versus host disease) and she will never be able to be a sun worshiper. Which means she will look 25 until she's 80 with lovely skin. We are anti sun people anyway, especially with our Irish skin and live in hats, sunscreen, and light layers, so not much changes there.
-Her broviac stays in for around a month, just in case. That means I'll have to flush the tubes and clean the caps once a day.
-House should remain clean and disinfected. (they had concerns with animals and smoking which are non-issues for us.)
-She can eat anything though things must be pasteurized, and veggies/fruits well washed.
-She has to drink a liter a day. Not sure how to make that happen...
-She'll be on a variety of oral meds, some for a few months and some for a year. But her list of meds is quite short compared to what it could be (yay for a strong girl!) so I can't complain.
-We are seen in Clinic weekly for 3 months, then biweekly for a month or so, then monthly for a year.
-She will be followed for the rest of her life, yearly.
-The big immune functioning tests are done at 4, 6, 8 and 12 months (this is a big appointment with lots of other testing too).
And that's the overall idea of it all. I think it sounds like a lot now. But add in a new baby and the ability to play outside and it will be survivable. What I didn't ask was if this is from day 0, or when we leave the hospital. Technically, we are already 17 days into our 4 months if it's day 0!
The hospital, chemo and transplant process hasn't been as bad as we imagined, so being at home for a few months won't be that bad either.
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| An amazing Tutu arrived today, topped off with Oreo face. |
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| Emphatic "I love yous!" |
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| Her favorite corner when she is untubied. |
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| I love the reflection off of her head :-) |
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