'cause this is going to be a long one. So yes, we are alive around here, crazy, but alive none the less. Noelani is fine and by all accounts so far our house has been spared anymore outbreaks of H1N1.
We have had a LOT going on, here's the synopsis before I go into details; Noelani turned 14, Alana had a delayed gastric emptying scan, Alana's new 'chair' came in, Alana's new chair was not put together properly so she almost went out of it head-over-feet, Alana's tube stopped working and started causing a lot of pain, Alana started walking weird, Alana's autonomic system has decided it no longer wants to play nice, Alana had a g-tube barium study done, Alana asks me "Why do I sleep more than anyone mommy?" and the most important, most amazing thing is happening next week...Alana turns 6.
Did I mention that Noelani turned 14?!? Wow...how'd that happen? Here in Alaska that means she is old enough to drive now (with an adult) and she is studying to get her permit. She is so smart, beautiful and caring that it shocks me how all those things can fit into one package. She had a wonderful birthday and I think she got everything that she wanted, which wasn't even much. We had a family party and it was great to have everyone over to share with. She is such a young woman now that it makes me sad, yes sad, to watch her grow up so fast. I am also happy and awed by the fact that she is such a young woman.
*sigh*
Moving on to Alana...We had to do the DGE scan to see if that was causing the back-up of her tube. We've still been unable to get more than 4-5 ounces into it and that's taking awhile all in itself. It started with it just backing up and not moving anymore down the gravity feed, then it moved into pain and screaming with her asking/begging us to stop putting things into it. The thought was that she may have delayed emptying of her stomach and by us pushing things into it it was causing her stomach to be over inflated, i.e. stuffed. I've not gotten back the official results of it yet, just that our doc sent it out to be read by the GI and he has yet to respond to it. Go figure.
Super-duper cool is that fact that her chair came in. Not so super-duper cool is that the DME didn't put the straps on correctly and when she fell asleep in it the first time she tipped over (like she does all the time due to the hypotonia) and if little miss Shaylin wasn't paying attention she would have landed on her head in the store. I had questioned the straps when we picked it up and was told that it was suppose to be that way and once she was in it fully and all the buckles tightened down she'd be fine. Again, lesson learned...ppl who deal with medical things all day long can be the dumbest ppl to ask medical questions. As I am walking out of the store, trying to get all the pieces of the straps off the ground ('cause the are now completely falling apart as she's thrashing b/c we had to wake her up) I am telling the receptionist at the DME "I DON'T CARE THAT _____ IS BUSY, PUT HER ON THE PHONE NOW!!" and then calmly try to explain to her that the straps are NOT alright and that they are going to fix them first thing in the morning.
Whew. When I get home I am telling Larry this and he brings it inside and we start looking through the owners manual and going online trying to find pictures of how the straps are suppose to look. Low and behold they are not on right, you are shocked I am sure, and it takes us 2 hours and pulling apart the chassis and fixing all the straps. Woudln't you know it once they were on right she was golden! She could no longer get out and was comfortable. Now that that is fixed though it is all that we'd hoped it would be. It fits her great, she loves the tilt feature and her feet are braced in a comfortable position. It weighs a bit but it is so worth it! She picked out the colors and says it reminds her of spring so all is good.
Moving onto the next few issues all in one ball o'wax. We kept trying to push fluids through her g-tube and then we no longer could. We'd get 1/2 her meds in and then she'd be doubled over crying in pain and begging us to not touch it again. McDr is seeing her almost every other day at this point b/c we are still working on clearing the pneumonia and sinus infection and she tries to palpate her stomach and that brings on an autonomic bump with flushing, eye drooping, temp. dysregulation, etc. and she, McDr, decides that she will call Dr. Dipstick and ask him what we should be doing. Dr. Dipstick agrees that this is not right at all and now wants to check the placement of the tube, the tube itself, and her stomach in general again.
Today Alana had the g-tube barium study done and there's good news and not so good news to report there. The good news is that it is not the tube itself and it doesn't appear to be her stomach either. The not so good news is that after they were done with pushing the barium in (20 mL) they wanted to flush it with some water and the fun began. By this point they had turned off the machine and were all done, nurse was just pushing the water and I was getting my stuff done while telling them that 20 mL is usually fine, it's once you get to the 3-4 ounce that it starts to be a problem. As I am telling her this she is still slowly pushing the water and I notice that Alana is no longer talking but withering on the table and flushed. Now she starts to moan and say it hurts please stop. The nurse turns back on the machine and takes another look and whatever it "is" appears to be something to do with the small intestine. We couldn't do anymore b/c there was no order for a "small bowel follow through" so they took what they could picture wise and instructed me to call our doc and have them write an order for that, the small bowel thing, so we can see what about her small intestines is causing her pain. Round and round the mulberry bush the monkey chased the weasel...
Wrapping up here; pt has been hard. She had to stop 25 minutes early today and as the PT said, she was done 10 minutes into the session. We are hoping it's because her core is so out of whack but she is walking very odd. Alana's gait has never been a big noticeable problem, sure she falls down a lot and runs into things but it's mostly due to her proprioceptive problems vs. her gait. Well now she is having major gait issues. It's hard to describe but she's throwing her feet out, left, right, left, right, and walking like she's trying to completely flatten her foot down without using her heel. She is so incredibly fatigued that even after taking a 3 hour nap after pt she is yawning beside me and it's only 5:30.
I wish I could answer the question that she asked me...how I wish I could not only answer it, but make it better and not so. In the meantime though I am going to celebrate and grant her her wish that she be a princess bat for her birthday and we are going to play games and have pumpkin cupcakes and laugh and sing and be ever so grateful that Alana will be 6 in Tuesday.
P.S. If you saw "Alaska State Troopers" on NatGeo you have seen my dad!
