Caleigh's been doing well with her eye patching. She actually doesn't seem to mind and hasn't fussed about it yet. She IS using her right eye to see when the patch is on and actually has good precision when reaching for things. We'll just continue on and see what happens.
Wednesday we went to the GI doc and all is well in that department. In fact, after he got a good look at Caleigh, he dropped her TPN down to 12 hours a day. That's just at night folks! It made a huge difference in our ability to jump up a go somewhere. Caleigh's urine output has also calmed down a bit. She was getting WAY to much fluid. We go back to see him in a month.
While we were there I had him look at Caleigh's central line. The incision in her chest had started oozing and was red just in the last week. She didn't have a fever just an ugly looking site. Eric and I have been changing the dressing on it every 3 days instead of 7 because of the discharge. Our GI wanted a culture of the site and for the surgeon to look at it. Since we were over at the hospital anyway I called the surgeon's office and he squeezed us in that afternoon.
When we got there our surgeon decided that Caleigh was having an inflammatory response to the sutures holding the line in place. So he removed the sutures. Now I know what your thinking...... The line is actually cuffed in further up in Caleigh's chest. The sutures that he removed were only there while the cuffed area healed. Didn't do a culture. We came home and did a proper dressing change and then preceded to wait the 72 hours for any signs of infection. This morning the site is less red and inflamed. It hasn't been oozing, but it doesn't look as healed as I want it to be. We'll watch it and maybe go back to the surgeon this week.
Friday was a busy day. We had our assessment and start to music therapy for Caleigh. It went well and I think she will enjoy having it as part of her routine.
Friday was also the first day that I had the lady come clean our house. The day before she came I was starting to feel guilty about spending the money on such a thing. All I can say is it was SO worth it. I was practically giddy all day. For those of you clean lovers out there I highly recommend letting go and handing it over! Snuggling down in my clean sheets, that I didn't have to wash or struggle to put back on, was just amazing. Right now she will be coming every 2 weeks. It feels like Christmas around here!
That same day we had another nurse come to meet us. She was nice. Showed up 30 minutes late and complained about her hour drive. She seemed almost disappointed that Caleigh's TPN had dropped to 12 hours. Not cool. She can only work Fridays and wants to do so from 7a-6p. Caleigh doesn't even get up until 8 and mommy doesn't even wear a bra until at least 9....so that's an issue.
So here's the real deal about nursing. I just don't want it. I don't want someone to come in and immediately check Caleigh's vitals. I don't want someone to have to go everywhere with us. I don't want to just leave Caleigh at home because I can. I want her to experience life. I don't want to take forms to our doctors and have them fill out the contents of our entire visit for the gigantic binder that sits waiting at our house. I don't want Caleigh's progress to disappoint the nurses because they fear that they might lose their hours. I'm calling them on Monday to cancel. "It's totally me, not you," I've been practicing my break-up lines. Hopefully it will go ok.
We do need help though. I plan on making calls to local universities on Monday to try to get a student to come help with Therapies, Stander time, AFO time, Crawler time, Gait trainer time, Patching time, Stretches and Learning. Those are the things that overwhelm me. Those are the things that keep me from just cuddling up and being mom.
I was thinking about the medical stuff the other day and realized that mixing TPN everynight and flushing Caleigh's line everyday and all the other "normals" that we do daily are just the standard for us. As a first time mom, it's all I've ever known. Instead of making 3 meals, 2 snacks and keeping the sippy cup full; I've got to make formula for the day and make sure the feeding bag stays cold and doesn't run out of Elecare. These medical things are my motherly duties. Whether they are "normal" or not, I'm ok with them.