Saturday, September 17, 2011

Weekend Update

The Gas Fiasco
As of 6:30 last night, we have gas service restored! What a trip this has been. Whoa. The new plumbing company we used was wonderful. Friendly service, FAST, and a decent price...all with the added benefit of discussing with a knowledgeable plumber. If you are a local friend and need plumbing work done, call Crown Plumbing! So, the plumbers started work on Wednesday. I came home to find the most beautiful looking trench that I've ever laid eyes on in the backyard, progress! They got the line replaced and the new up-to-code valves installed on Wednesday night, but when they pressured tested the line, gas was still being lost somewhere. We have (well, HAD) two old-school gas wall heaters in the bathroom...Josh didn't mention them to the plumber, because the guy from John Moore told him they were not important for this. Turns out, he was WRONG, they were important AND they were leaking gas. Because the new plumber wasn't prepared for working on these, he  had to get additional parts and come back the next day. The heaters were removed and the lines were capped off (and now we are sporting some wicked-fancy holes in our sheet rock) and he retested the line. It was STILL loosing pressure, so he went in search of more leaks. He found on in the cubby in BubTar's closet that houses the furnace. There was a leak at one of the 90 degree turns in the line, so he fixed that...then he found another...and ANOTHER! Three leaks up there, one in each of the bathrooms, in addition to the line itself detaching. Even though they were probably minuscule leaks without full pressure in the lines, it is still a little unsettling to discover! He fixed everything on Thursday morning. Thursday afternoon, a city inspector came out and said it was in working order and they would release the utilities so the gas company could return our meter and turn our service back on. That evening, a worker from the gas company came out and refuse to install our meter because the trench was not filled in yet. It seemed like a total BS excuse since the neither the plumber nor the city inspector mentioned that was a problem. Alas, what can you do? So he left and we still had no gas. Friday morning, the plumber had the diggers come fill back in the trench and we called the gas company back. I stayed home on Friday until it was time to take KayTar to therapy, at which time Josh came to sit at the house just in case they showed. They did show, but got called out on an emergency and said they couldn't say when they would be back. I just picked the kids up after therapy and brought them home to wait. It was Friday afternoon and we did not want to go another weekend without gas! He showed up at about 6pm and got us fixed right up. He said lines are snapping left and right in our city and he had been called out on 3 just that day! He also said that when people ask him what plumber to use he says, "I can't tell them who they should use, but I tell them who they shouldn't use and that is John Moore! Call John and pay more!" He also said the guy that had come out the night before will do ANYTHING to get out of working and there was no reason he couldn't have reattached the meter with the trench open. Siiiigh. More incompetence. It is all good, though, because we have gas again...after 16 days without it! A hot shower in my own home has never been as luxurious as it was last night! :)

KayTar + Nexium
KayTar started Nexium 2 days ago and it has been encouraging so far! The first day, she ate 2 pieces of bacon, most of her Pringles, an entire hot dog (hold the bun) and asked for a second at lunch, 3 mini-popsicles, and 2 still-frozen nuggets at dinner! This morning she has already had 2 pieces of bacon, a jar of baby food peas, 4 pepperoni, and a mini-popsicle. She told me that she hasn't thrown up in her mouth for 2 days! :) I'm feeling very hopeful about this medication switch!

Insurance Drama
Last Friday, I spent almost the entire day on the phone.The insurance issue with the new clinic and her current health plan has reached an impasse and we are going to have to switch. I first called the state to inquire about how I would go about changing health plans, since we never have, and I was assured that it was a simple phone call and we would be squared away. But before I made the switch, I called EVERYONE to be sure they all take the prospective new plan. I talked to probably 25 customer service reps...every clinic, doctor, pharmacy, HHC, therapist that KayTar receives services from was on my list. They all accept this health plan, so I called the state back. This time I was told we were no longer able to switch, because we had been on our current plan more than 90 days. We could appeal this decision in writing, but even if approved it wouldn't go into effect until after the first of October (at the earliest). Siiiiigh. I told her what the previous rep had told me and she said that was not the case. So I said okay, and then called back to try to reach the original rep. Except, you can't actually do that. They give you rep ID numbers, but they are useless because they do not have extension or someway to connect to do a specific rep. So I used this third rep as a tie breaker of sorts (or a tie creator? seems like the phrasing here is wrong, but you get the idea), and she said the same thing as the second rep, so I submitted a letter in we wait! As a little bonus to this story, I received a letter in the mail yesterday saying that the kids might lose insurance coverage at the end of October. I promptly had a series of small heart attacks while dialing the state HHSC to find out what was going on...only to be told that the letter was sent in error and we would be receiving a corrected letter in about 2 days. WHEW!

KayTar + head pains
Poor KayTar is having a lot of headaches/pains lately. She had at least 2 last week and one every day this week. We were talking about it a couple of days ago and she said, "I have head pain EVERY day." but she said it with a DUH tone of voice, like this was obviously something I should already know. They are not incapacitating and often she just wants an ice pack, but it still doesn't sit right with me. She complains of pain over her right eye on her forehead and in her eyes themselves. She has an ophtho check on the 27th, so if it is a glasses issue, we should know then. Otherwise, I'm not sure what is going on! Maybe sinus pain from allergies? We have her on Benadryl and Claritin, and her allergies seem well-controlled. Maybe headaches from transient desats? I honestly don't know. We see pulmonology on October 11th (since we had to push it back due to the insurance drama) and we see the new geneticist that day, too. Hopefully one of her doctors will have a helpful suggestion!

KayTar + OT
Yesterday was KayTar's first OT appointment in over a month! She was doing feeding therapy and with the gut changes and decreased feeding tolerance, we just took a break while we went through testing for that. Because it still isn't under control, we are taking a break from feeding OT and switching to more traditional OT for her fine motor strength and coordination. We have known for sometime that she has weaker hands than her peers, but we just have not focused on it until now. The therapist did testing with KayTar yesterday and WHOA, her hands are weak! She was tested with a hand gripper equipped with some sort of pressure guage, and she scored a 6 with one hand and a 7 with the other...normal for her age is 28-29! That is significant weakness. That combined with the inefficient way she grips her pencil and the EXTREME force she uses to push the pencil to the paper, it is no wonder she fatigues so easy during writing assignments. Until we are able to get her back to "regular" feeds, we will be doing all fine motor work in OT, and if we get her gut issues under control, we will add in some texture/feeding work, too...just not as much as before. Oh, and the OT really noted her new breathing pattern, too, and commented it was not nearly that bad the last time she had seen her. She wants the pulmonologist to make sure things are okay with her airway before we start back with the feeding stuff, too.


Gizabeth Shyder said...

I have had a leak at the water meter for a couple of months - bills double. Water company turfed it, two plumbers could not figure it out, specialists now at the water company - two - and it is still a problem. So frustrating! There are strange chalky lines around it now so I am hoping that means someone is coming to fix it soon . . .

Anonymous said...

Just a back and talk to a Supervisor. Tell her what the first Rep told you. You will need her name, date you called and the approximate time you made the call. They record ALL OF THESE CALLS. They will listen to the tape, and most likely they will allow the change before reading the appeal letter.

I had an issue with the insurance company about something, and I was given an authorization number and everything else I needed and then the provider said they received a denial. I did what I explained above, they listened to the recording heard her give me all the information, and had to honor it.

Might be worth a try!

Take care!


Kristin said...

Aw man, I was hoping for some miraculous KayTar fix now that the gas leaks are gone since she has so many of the symptoms of exposure, from her headaches right down to the irregular breathing...not that it would explain why the rest of you are fine and she still has troubles away from school. Just wishful thinking. So glad your gas is bac!

Katie said...

Great goodness Kyla! You guys have been hit with serious oddities!

KUP on the results of your letter over insurance.

leah said...

Seriously - I hope you never, ever have gas issues like that again. So scary, and so FRUSTRATING to get the right help out!

I hope the Nexium helps KayTar. It has been "the" drug for Nolan's reflux, though we obviously still have flares and issues from time to time. Good luck with the OT, too - we're headed in that direction for fine motor skills, but I'm hoping to avoid adding in any more therapy (they do pull-outs for therapy in our school district, and with the teacher of the deaf and speech pull outs, I would hate for him to miss any more class time).

I really hope her headaches clear up - the migraines sound tough to deal with for a little one. :-(

jill said...

Sorry for the troubles, but it sure has been interesting reading lately.

The school nurse told me that most kid's headaches are caused from dehydration, and when we really pushed the water, it fixed the headaches. Considering all her her tummy issues, I wonder if she is getting enough liquid?

Kyla said...

Jill, thanks for the dehydration suggestion! She is carrying her water bottle today, so we'll see how it goes.

Becca said...

Wow, so good you got the new plumber! How scary to have gas leaking into the house! I can't imagine going that long without hot water!

Also, yay for Nexium! I hope the other issues are just as easily resolved.

InTheFastLane said...

That gas stuff is CRAZY!!
I am so glad that it got fixed, because it is super scary. I hope the insurance stuff gets figured out.