How do you think we celebrated our first day off?
With a sleep in?
A trip to the park maybe?
No, not us.
We started the holidays off with a surgery - thankfully only a minor one.
Ashlea had her PEG changed yesterday (to a Mic-Key). I have BIG misgivings about this, but her old Entristar was so leaky we had to do something about it (and the surgeon said the new Entristars haven't been very reliable) so we went with a Mic-Key. My biggest concern is that she will pull it out. When she has a tantrum her first action is to open her PEG so it leaks everywhere. If it is a beditme tantrum she pulls out the extension tube so that milk leaks everywhere too. I am really worried about her pulling out the actual PEG early in the night and then me not realising until the next day. What if the hole has already started to close over??? Please tell me this won't happen. Much.
She also had an eye and dental exam. I have been very worried about her teeth. She has almost ground some of them down to the gums. If you click on these photos to enlarge them you will see what I mean.
I'm hoping her new teeth will be huge choppers like Emma's so that at least it will take awhile for her to grind them down. Better still, it would be nice to be done with the grinding by the time she gets her new ones!
In the end the dentist was fairly happy with her teeth and said there is no need for treatment at the moment. The eye team were also happy - things seem fairly stable with her eyes, and her current glasses are the correct prescription so that is good.
We also got them to take blood while she was asleep (as she was due to have bloods in a fortnight anyway). I haven't followed up with the kidney specialist yet, but I did find out that her creatinine is up again. It is now 277. At the beginning of the year I think it was about 210, in October it was up to 246, and it has jumped again to 277. It makes me feel sick to my stomach to think this could be the beginning of the road to transplant. I'm not ready. Things have been so stable lately, life so predictable. I'M NOT READY!!
The highlight of the day was that we bumped into Sarah and Violet while we were there. We really should arrange to meet somewhere more pleasant though!!