Caleigh's hair is finally long enough to try tiny piggies. Pig tails, that is. Some days it's a battle and others she could care less. I think they make her look so grown up. My little toddler....that doesn't toddle. Oh well, she looks fabulous moving however she wants too!
Our big news of the week is that Caleigh is now on 16 hours of TPN down from 20 hours. She is gaining weight too fast on the TPN. In January Caleigh weighed 26 pounds and now she weighs 29 1/2. This is what Caleigh's GI chart now says: "mom states patient is becoming chunky. Please consider decreasing TPN volume." Chunky. Yep, it's in there.
Caleigh's g-button feeds are up to 18ml an hour and will go up to 20ml on Tuesday. My rough estimate is that we have about 11 weeks until Caleigh is up to full feeds. If all goes well and she continues to tolerate her feeds, she will be on her way to being TPN free once again. This is my secret, ok, not so secret plan instead of surgery. Our doctors know we want to try to advance feeds first. So that is what we will be doing over the next 3 months.
Nursing has been a mess lately. I've only really met 3 nurses and each one had their own weird way about them. They aren't coming back. The company has apologized on several occasions for the rough start. Since Caleigh has a central line she has to have an RN. The general pool of home health nurses are LVN's. The company can't do central line training. The nurses have to have experience. So our choices are slim. I've agreed to continue interviewing nurses as they come up, but I've made my feelings clear. I haven't seen any in over a week and it's actually really nice. I've thought about moving companies but I'm not interested in going through everything again.
In an attempt to make me feel less overwhelmed we have hired someone to clean our house. She starts this Friday and I can't wait. This means a lot more time for Caleigh and maybe some extra time to finish unpacking. I've taken one of our bedrooms....filled it with the boxes needing to be unpacked....and closed the door. Out of site out of mind. So far it's working out wonderfully for us. I've got to "let go" of something and I think letting go of cleaning is a good first step.
This week we had our annual review of our respite Medically Dependent Childrens Program coverage. I learned a lot this time around. We will be rearranging our respite company and getting some other things worked out. Lots of paperwork ahead.
The coming week is full of appointments. GI & Nephrology. A new eye doctor appointment for a second opinion. The start of music therapy. Plus, all the other therapies that fill our days. Busy. Busy.