We've been keeping really (really, really) busy around here! Emma is doing better with each passing day. As she would say, she's a 'Crooper' (Trooper). It took me a few times to figure out what she was trying to say.
I thought I'd give you a glimpse of what our new nightly routine has been like with her IV meds.
This is her actual PICC line (Well, the part that is exposed.. It's actually 19 inches long, goes up her arm/shoulder and to her heart.) This was when the IV was hooked up, otherwise we keep it covered up really well so that she has NO access to it, to be able to pull on it! I'm glad we have had cooler weather because I cover it up and put long sleeve shirts on her so she can't see it. She actually forgets about it most of the time. Although sometimes it gets itchy, and I have to try to keep her from itching it.
And, this is what I use each time we do the antibiotics (which is every night) First, the picc line needs to be cleaned really well with alcohol swabs, and has to air dry before hooking anything up. After it has been cleaned, if it touches anything (including her own arm) you have to start over, because anything on the end tip of the picc connection will go straight into her blood when I start the IV so it has to be really clean.
Then I open the lock on her line and use one of the saline syringes to flush the line before starting the antibiotic. The antibiotic balls (They look like little hand grenades... they are pressure released) have to be kept in the refrigerator but should be taken out of the fridge a few hours before using them. They say it takes longer to cycle through if it's cold, but honestly I have done it each way and it's the same amount of time. Again, the end of the line has to stay completely sanitized the entire time so I have to quickly switch the syringe with the antibiotic connection without it touching anything - and then release the lock on the antibiotic - - and then.... we wait for about a half hour to 40 minutes while it slowly releases. Once it's done, I switch that line with another saline syringe, flush the line again - and then use a heparin syringe (which basically is used to prevent clotting over the next 24 hours until we flush it out again.) I push that through and then I put the wrapping back on it, put long sleeves on her and we're done!
She is actually getting really comfortable with it. It used to be a large production every time we had to do it, Andrew had to help me hold her down so she didn't squirm away, and she would get really anxious. Now she tells me when it's time (we do it at the same time every night) and she helps me. She counts for me, tells me whats next, etc...
And when we're done with the saline syringe she always asks for it so that she can 'do daddy's medicine' and she sticks it into his arm, or his head, or wherever! I guess it's therapeutic for her....?
It's just the syringe with a flat end so she can't hurt him or anything... but, I love his faces in these pictures.
Emma, the nurse.
I worked most of this weekend, so unfortunately I had to isolate myself for several hours each day to get done what I needed to; but Andrew kept the kids entertained and they had fun. I obviously had to take some time off while Emma was in the hospital so I was catching up a little and doing some testing for an initiative we're working on. On Saturday Andrew and my dad took the kids to a car museum that I had gotten tickets to on Groupon a while back.
Definitely right up Drew's alley; but I think Emma had fun also. Andrew said they had all the originals of cars that were in movies, the bat mobile, back to the future car, Herbie, Fast & the Furious, Indiana Jones, etc...and they also had really nice restored old cars that were for sale.
So that was a fun Saturday afternoon activity for them.
Drew & the GhostBusters car
Emma, the little race car driver. This one cracks me up, with her tiny little head sticking out of it.
Lightning McQueen! Drew's favorite! (That's what he told me when they got home) He was so excited to tell me all about it. I love the fact that they can talk enough now that they can tell me what they did during the day, and we can have little conversations. It's so fun to watch them develop into little people. It's also really fun to hear their version of things. Our nanny will tell us what they did during the day and specific stories, and then to hear it from their perspective is so entertaining.
Emma driving the Flinstones car.
And then on Sunday I also had to work for the majority of the day. Andrew and the kids went to play at the park and then he went out to watch Football games and I was able to spend the last few hours of the weekend with my munchkins.
I have to admit, I have been really bad at cooking dinners the last few weeks. Usually I am all about it, and we always have a homemade, healthy dinner 95% of the time. Well, this last week it was pretty much either take out, or I made quesadillas, grilled cheese, or something quick like pasta.
I have promised myself (and Andrew) that I'm going to be much better about it this week. I was just so tired by the time dinner time rolled around that it was the last thing I felt like doing. I didn't have any energy for it.
I was working on my laptop a lot this weekend, and at one point I looked up to find this:
(Both of them busy working on their own little laptops)
Emma had a blood draw yesterday, and based on the lab results from yesterdays blood (Which I'm waiting to hear today) we will know where she stands with her #'s and whether we need to continue for a little while longer, or can get the picc line pulled. I hate the stupid thing, but I honestly don't mind keeping it for a little longer if it means they don't have to stick her with more needles. The nice part about the line is that when they need to draw blood they just hook it up to the existing line and she doesn't even feel it.
But, I am waiting to hear some results today, so I'll keep you posted! Fingers Crossed!!
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