Wednesday, June 22, 2011
The Vest. The craziest medical contraption I've ever seen for home use, and the one thing that's kept Parker so healthy!!
We got the vest back in May 2010 and have been using it twice daily since. Parker has gotten used to it by now, but at first it was a battle that usually ended in me holding him in some awkward position that would rival most professional wrestlers. Sometimes this still is the case, especially when having to give predisolone! Uh, that stuff is NASTY.
The Vest has been an intricate part in keeping Parker's lungs clear of stagnant mucus and building up on his lung walls. In normal healthy lungs, you have cilia that function and 'beat' many times per second as you breath in and out. You also have cilia in your ears and sinuses. They also assist in the coughing reflex. In Parker's lungs, or any child with Primary Ciliary Dyskenesia, these cilia either have limited function or a paralyzed completely. It is unclear yet how Parker's function, but they aren't functioning adequately at this point. So, the Vest 'beats' for him! It pulses air in and out of this vest at a very high frequency and squeezes his chest some to allow the 'beating' to work more effectively. Parker is on a ramp system, meaning he starts out on a low pressure/low pulse rate (level 1 pressure and level 10 pulse rate) and then ramps up to level 4 pressure and 16 pulse rate over the course of 10 minutes, and then he stays at this high rate for another 10 minutes. This is called a Michigan style if I remember correctly, but this also allows Parker's chest to get 'comfortable' before the real work begins!
We have noticed a significant difference in Parker's ability to cough during this process, and its a good 'huffing' cough that allows him to clear his lungs. During the day and between treatments, he is coached to 'cough' if he starts to sound junky. He does a pretty good job of getting some good coughs out, and if that's not enough, then we go up for another quick treatment. This is also Parker's time to watch TV during the day, or his favorite movie. This morning, we finished Tangled that we've been working on for 2 days. I think he just has a thing for Repunzle ;)
During the initial ramping process, Parker gets a DuoNeb treatment (albuterol/atrovent). This opens the airways (albuterol) and breaks up the mucus (atrovent) to allow the high pressure to work efficiently! After his vest treatment, he gets his long acting brochodialator (Advair 230/21) to keep him open and clear, along with a cocktail of other medication for the day or night. This happens twice a day at minimum. And this allows him to be able to run and jump and play like a normal kiddo for the rest of the day :)
He is definitely coping very well with all this medical crappola he has to go through, and hopefully someday we can back off some of the medication and treatments necessary as we get closer to finding out what's caused this and continue to fight for a cure for PCD. The only known cure right now is a lung transplant, and this only happens in the most severe cases. I hope and pray Parker is not included in this category, but we take it as it comes. Until then, the Vest is a permanent fixture on our routine :)
Thursday, June 2, 2011
I LOVE lists :) They are what keeps me on track through the day. There was just one thing left on my list, and it'll have to wait for a rainy or another chilly day. Today was chilly (58-62) all day, so we stayed inside. Ran errands most of the morning, and got lots accomplished!!! We also got our new GroVia's in the mail today as well as our GroVia TESTER!!! I'm so excited about it :) I'll stock on this one! I have SOME reservation, but when we are able to talk, I'll give you my full run down! Rented "Baby Signing Time" from the Library as well as a kid's cookbook! Tomorrow it will be very warm (high 80s) and I plan on making a few loaves of bread with kiddo. These pictures were from making biscuits a few weekends ago. Kiddo LOVED it. He's so funny when we bake. No matter what it is, when I put it on the cookie sheet or before he puts it on the cookie sheet, he MUST take a bite from every single thing!!
Tomorrow we have a DR appointment in the morning (Kind of a well child check and recap of the month, but there are some minor things to discuss and get an action plan), and will try to play for the remainder of the day. I will be setting up his new sand and water table tomorrow. Still trying to keep an eye out for a kids umbrella set or some kind of shade/shelter that's collapsible. Anyone have any thoughts?
Wednesday, June 1, 2011
So, on Wednesdays, Parker gets play therapy and breakfast with his visitor- Judy. Judy is like my second mom at this point. Her oldest son is my age, and she 'gets it' with the stresses of being a young parent (she was, but married). She has so many great ideas about crafts and interactions, and just how to chill too! She keeps telling me I need a vacation, and ya know, if SSI ever comes in, I just might take that cruise I needed to!!!
But today Judy came and we had cereal and bananas outside at the picnic table. Parker LOVES bananas and is learning how to peel them. And then she said we were going to try painting. OK, I thought... How's this going to go over with him and his not wanting to touch anything messy. She had some ideas!! First, she watered down paint and put it in a spray bottle. We know from previous times of cleaning windows and using air freshner (no, not using, dousing EVERYTHING in air freshner!!!) that Parker is good at this!!! And he is!!! She also did bring brushes and he did very well with those too. This is what transpired. Tomorrow, I'll post on how to put up a revolving art display!!!