Just got home from an all day trip at Primary’s. With the price of gas it is getting too expensive to go up for just a single appointment, so we are trying to combine appointments.
Our Monday in a nutshell:
Parker weighs in. Down yet ANOTHER .5 of a pound.
Reed and I glance over at each other and our hearts sink.
First we saw our ENT, who would like Parker to get new tubes in his ears. He’ll be on the dance card for the same surgery date for Parker’s teeth cleaning, oral xrays, etc. Reflux has really done a number on the Brave Hero’s poor teeth.
Next a visit with the new sleep specialist. Drug up Parker’s 80 pound vent and humidifier to do a mini-vent titration. Gee. Whadda ya know. Parker’s vent settings need to be bumped up a notch…..or four. But it was really hard to get a decent reading as if Parker isn’t asleep when the vent is on he pulls it off.
Often.
Had blood drawn.
X-rays taken.
Spilled formula all over Reed’s shoes while trying to feed Parker in the middle of a busy lobby with everyone wanting to stop and look at the kid getting fed through the hole in his stomach.
Our fun filled schedule for the month of September.
9.04.08: Sleep Study
9.24.08: Scope of Parker’s bowel from his bottom side up. He is still having significant amounts of bleeding via his mucus stoma and his tush. Something isn’t right, and we need to find out what.
Here is where I should be listing Parker’s ear tube surgery and teeth cleaning surgery.
But, WAIT! Our insurance doesn’t cover dental. Silly me. For some reason since this was going to be a surgery deal with Parker needing to be put totally out, I just figured it would be a hospital thing……and at least covered by my insurance company’s usual miserly amount.
Uh. Nope.
Sometime soon, I’d love to come home from one of these day trips and report that Parker’s health is significantly improved. The doctor’s are excited and encouraged! And there are plans for weaning Parker off of his oxygen and zillion medications.
AND that we didn’t have to rummage through the couch cushions to find enough lost change to be able to put a the necessary gallons of gas in the tank for the hour drive up to PCMC.
Today isn’t that day.
Tammy – I’m so sorry
Hopefully good news will come your way soon!!! Hugs and prayers!
I’m so sorry. One of these days he’ll come home with that glowing report and it’ll be all the sweeter for these crappy days leading up to it.
Tammy, you are superwoman! I really can’t imagine or even try to pretend to be in your shoes. But you know what, you are the strongest person ever!! I give you so much credit and praise for coming home, setting Parker up with what he needs, and then coming to blog about it! You are my hero…and Parker’s too.
Things will look up soon and all of the worries you have now will melt away like hot chocolate sauce on a scoop of cold vanilla bean! xxoo
Oh boy, what a day! I guess I shouldn’t be upset that the school nurse called because they were having a snack on the first day of kindergarten and there was nothing Michael was allowed to eat (although the teacher told me the only snacks would be on birthdays, so I didn’t send anything in yet).
Thank you for putting it in perspective for me – and I truly hope and pray that Parker will see a miraculous turnaround very soon (and that the insurance company will get a clue)!
hang in there Tammy…….hugs and prayers.
Twitter: livingingrace
Aug 25, 08
Hugs to you. I feel your pain. In every aspect …. sigh.
WOW…your in my prayers and thoughts – as always – and I have to say every time I am struggling – I think of you…if you can do this, if you can come out smiling then I can – You are really an amazing woman!
Poor little man. I wish and pray for the same thing for you, your family, and especially Paker. :/
Tammy, You and Parker (and Reed) are in my prayers every day. I made a small donation this weekend to the Parker (aka cutie patootie) fund, (any other lurkers out there in blog land want to join me?). Love how I can use PayPal. I plan on saving my latte money (making Yuban at home) to donate to your gas fund. I was wondering which of the pres candidates has a better health plan? I’d like to write your health care provider a letter (I’m sure you’ve done that). My husb. is a longshoreman, and his job is very dangerous, and the union gives us good benefits. We are fighting to keep our union strong, the employer is constantly trying to take things out of our benefit package. Hugs from California….JenK
I’m so sorry it didn’t go better and the insurance issues are just beyond frustrating. The moral of the story is that Parky baby is here for the long haul. He may not improve by leaps and bounds, but baby steps are OK, too. (((((Hugs))))))
honey – i don’t know what to say to make you feel better because I know that you are doing the best that you can and that you and many others are praying as well to make miracles happen.
All I can say is to take things as you continue to do so and keep your faith up – you are doing a great job and only great things can come from that!
Love you all. Hugs and prayers, always.
Thinking of you every day…feeling your hurt as well. He looks so good! Can you throw some whipping cream in with his feeds?!?!
Why insurance companies think good dental care is not necessary is beyond me. We are all rooting for you and loving on Parkie from all over the world! Prayers for weight gain and resolving the teeny-tiny designer hiney issues!
thinking of you….and hoping for better days ahead…and more spare change ending up in the cushions!
Sorry for the crummy appointment.
I too hope that one day you guys will go in and they will say that Parker is doing so good and there is no need for all the meds and equipment. I did leave you something on my blog though, check it out!!! 
Insurance companies have no common sense. I am praying hard for the day you are hoping for to come!
I just stumbled upon your blog by linking from other blogs. Anywho I was reading about your son and got to the portion about the dental not being covered and the insurance etc. I am sure you have already been down this avenue but just in case you haven’t I want to mention it. Have you tried applying for medical assistance? My daughter has autism and what seems to be some other issues popping up. We live in PA and for a long time I thought my hubby made too much to qualify for med asst. much to me surprise because of my daughters disability with documentation she was automatically qualified. It covers everything our personal insurance doesn’t. We had to have her knocked out for dental work and anything our insurance didn’t covered it covered. I really hope this comes in handy for you!
hugs
Don’t you with Utah had some of the same wonderful benefits that other states have – it’s so discouraging eh
I was hoping for a much better update – but – Parky is still cute as can be, and hopefully the newest round of tests will offer some information. Sorry about Rigel’s school crap – like you needed that on top of all the other stuff – who is this teacher – enquiring minds want to know!!!
Crap. I hate days like that. What’s a kid gotta do to get some good news? Or at least not bad news? I’ve never even thought of our dental stuff not going through insurance. I added both kids to our dental last year, just in case, but I know that our dental isn’t nearly as good as our medical.
Have you ever asked whoever monitors your feedings (ours is developmental peds. who I hate. a lot.) if they can run the formula through your insurance? We switched to Pediasure a while back, but the nurse practically yelled at Shawn for paying for formula out of pocket. Um, how were we to know? No one volunteered that info. 13 specialists. Multiple visits each month. No one thinks to offer info.
And don’t you love the audience while you feed your kid? I had a woman stand and stare at me with her hands on her heart at the aquarium this summer. I gave her a dirty look, indicating it was time to just move along. Turned my back, looked up a minute later to find her relocated to a new angle and still staring. Whack???
I’m so sorry! That day will come, though – I know it.