Skip to main content

Another busy week (Fri 5-7-10)

We've survived another week. :) This will undoubtedly be long and boring but if I don't write things down I forget them so here's our week.

I started out the day on Monday by having an in-depth discussion with Cole over our bowls of Cheerios about how dinosaurs went potty. Monday was also bill paying day, which led to the discovery that we must have a water leak somewhere on our property because a year ago we were using 6,000 gallons per month, then it took a jump to 11-12,000 and stayed there for a year and now it's up to 16,000. I know we do more laundry now that Raya's around, but not 10,000 gallons' worth. :)

As most Mondays go, by the time 5:00 rolled around I was ready for it to be bedtime. Once Donny got home, I clocked out for the evening and went to visit my friend Tarah and her sweet, tiny little baby Reese at the hospital. It was a great way to decompress from a day of rowdy kids. :)

Tuesday was Raya's PT appointment. She had missed it last week because of her BAERS hearing tests (which she passed with flying colors, yay! :) so her PT decided to do some new assessments to see where she's at. She has come a long way with some of her motor skills and still has some delays with others. She tested about 3 weeks behind in stationary & reflexes and about 6 weeks behind in locomotion, which is mostly because she only rolls to the left. Overall though, she is doing very well with her motor skills now and her coloring & comfort level have improved a lot since we started doing the continuous feed. I also had another long and infuriating conversation with the insurance company during which they finally answered the question I've been trying to get answered for 2 months now. If they had just given me accurate information 2 months ago, I would have known that I was appealing to a brick wall and more importantly, WHY they won't pay for Raya's doc band. I could have just known then & there that we were saying goodbye to $3500 with no chance of ever getting any of it back and saved myself the time & energy of appealing it. It makes me angry but they have definitely built themselves a good, solid brick wall that patients can't penetrate no matter how much research & documentation they have to support the medical necessity of the treatment.

Wednesday morning I dropped the kids off at their cousins' house and took Raya to PCH for a nuclear medicine gastric emptying study. First they did an x-ray to make sure her NG tube was in the right spot so they could put the radioactive stuff in her stomach. After the x-ray they took us into another room and had me mix up an ounce of formula and then the lady doing the scan took the bottle & added the radioactive isotope that makes it visible on the scan. Then they strapped Raya down to the table with big velcro straps that held her in tight so she couldn't move her body and put the formula through her NG tube. The scan took about 90 minutes from start to finish and she only cried for about 20 minutes of it. (only 20 minutes, ha ha :) She was really tired but couldn't wiggle herself into a comfortable position and since she NEVER sleeps flat on her back and hadn't had her Prilosec yet, she was not a happy camper. She finally fell asleep about 10 minutes before the scan was over, go figure. When we finished up there, we stopped by to visit Donny at work and then hurried over to pick up the big kids so we could get Raya to her next appointment with the GI nurse. She got weighed again and is up to 14 lbs 12 oz. (For comparison, that's exactly what Kaida weighed at 10 months, Cole was that size at around 5 months and Ashtyn was that size at about 4 1/2 months.) Also, her labs came back normal. Her hemoglobin & hematocrit are a tiny bit low but not enough to warrant doing anything for it. After that we went home for about an hour until it was time to pick Ashtyn up from school. It was just long enough to give the kids a little snack, change Raya's smelly clothes and give Kaida another dose of ibuprofen for this:
She got a 4 lb weight dropped on her toe. Ouch.
I went to the young women's activity at church that night & then dropped Raya off with her Auntie Brooke while I went & helped my dear friend Monette frantically throw her belongings into garbage bags because she was supposed to be out of her house the next day. Raya had a fabulous time with Brooke and I had fun chatting with Monette. :)
Thursday was supposed to be my day to catch up on all of the household stuff that gets neglected all week while I'm running Raya to appointments but right as we were getting ready to leave for school, Kaida threw up all over my bathroom floor. I hurried & cleaned up & changed her clothes and then took Ashtyn to school. On the way home, Kaida started throwing up again and I asked her to please make sure it all stayed in her lap so that Mommy didn't have to clean it out of the rental car. I realized as I was hearing myself say it how cold & heartless it sounded. Mother of the year. :) While I was dismantling her new carseat so that I could wash the yuck out of all the little crevices, Cole found his way into a little bottle of concentrated all-purpose cleaner that was in the garage. It's like dish soap only thicker, and he spilled most of the bottle down the front of his pants & in a big puddle on the garage floor. I didn't dare put his pants in the washer like that or we would have had a laundry room full of bubbles, so instead I put them in the kitchen sink & used the soap that foamed out of them to wash Kaida's nasty carseat parts. I'm so resourceful. :) That was all before 9:00 in the morning. The rest of Thursday was spent giving Kaida little sips of Coke & a cracker followed by her throwing up the Coke & cracker and taking long naps on the couch. I felt bad that she was sick but it was nice to get her to take a nap without having to fight her on it.
Thursday afternoon Raya's GI nurse called to tell me that the results of her pre-scan x-ray had come back and that her NG tube placement was perfect. Yay me. :) She also told me that based on how often Raya's still been throwing up, the doctor wanted to change her feeding schedule again so now she gets 5 hours on and 1 hour off. It's still a total of 20 hours per day but hopefully breaking it up a little will help her to not throw up as much while we wait for the rest of her test results. I also went swimming suit shopping that night which was rather disappointing. Let's just say there's a difference between being slender and looking good in a swimming suit.
Friday morning I didn't get dressed until about 11:00 and neither did the kids. Raya pulled her tube out for the 4th or 5th time this week, which reaffirmed our desire to go ahead with the g-tube. :) Skylar came over for a little while and then Donny got home from work in time for me to take Raya to her appointment at Cranial Tech. (The PCH parking garage gods were smiling on me because I got quite possibly the best parking spot in the whole garage. :) She's had her doc band for 2 weeks now but really wasn't able to wear it much at all the first week because of skin problems. Now that she's been wearing it full time for a week, it's really starting to make a difference with some of the facial features that had started to shift. She still has a ways to go but it's a relief to see it starting to work already since the first week was so rough. When I was getting in the car to leave PCH, the guy from the auto body shop called to tell me that the parts that were on backorder have been released from the factory so if they show up Monday or Tuesday, I'll probably get my car back next Friday. Oh, yeah, and I finally decided we'd had enough of it being 89 degrees inside our house so we kissed our $67 electric bill goodbye and turned on the AC.
After we got everybody cleaned up Friday evening, we dropped Ashtyn & Kaida off at Skylar's house and went to Donny's cousin Garrett's wedding reception with Cole & Raya. It was really weird driving off without 2 of the kids and only having to keep tabs on Cole at the reception. :) The food was heavenly and we had a good time visiting with cousins. It was a nice end to a busy week!

Comments

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …