Update Friday Noon

I’m about to go down with Parker for his swallow study. This will be followed by a series of upper GI xrays.

They will be placing a NG tube today. Parker has refused anything but Pedialyte since Monday. He is losing weight at the speed of sound.

Starting MEGA reflux meds today. They feel that Parker’s lung xrays from yesterday show some areas where he has been aspirating. I’d like to see a side by side comparision of last month’s x-rays vs. yesterday’s x-rays.

Eval for Bi-Pap today.

On Tuesday Parker will be sedated and undergo a scope of his colon using the upper hole of his stoma as an entrance.

He will also undergo a rigid scope upper GI as well as a bronch scope. ( I can’t remember how to spell that one. opps!)

They will do a eval for a trach while he is under as the consenus is that he is heading in that direction with the new recomended CPAP levels.

Dental wrote that their feelings were that Parker’s teeth were eroded vs. just stained from meds. On Tuesday they will go in and give them a good cleaning and perhaps a cap or two after ENT and Pulmonary and GI get finished with him.

*sweating bullets here*

We will go from the OR to the PICU on Tuesday. ahhhhh! We could be in the PICU for a couple of days and released back to the floor for a few days.

It is going to be a loooooong and scary 7-10 days. I wonder if they could sedate me.

Oh. Reed brought up our itemized bill from last month’s stay up here. They charged us SEVEN DOLLARS an EIGHT OUNCE can of Pediasure.

AND each time the RT comes in to put Parker’s CPAP on it runs us (ahem) FIVE HUNDRED AND TWO DOLLARS. That means we get billed that each and every single night. It takes the RT perhaps 10 minutes of time each night to perform this duty. Yeah. Even if I put Parker’s CPAP on while he is here we STILL get charged.

Is it just me or is there something totally wrong about this. The cost of health care in the US is frightening. Simply frightening.

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About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. I’m sweating right along with you reading all that you are going through.

    I feel I need to warn you to make sure they start the ng feeding VERY SLOWLY! They fed Michael at first what the “normal” amount would be for a baby his age and he got very sick. Please e-mail me if you have any questions about the tube feeding bsherman@cri-search.com. The ng turned out to be a big help for Michael after we got it right for him. I loved it for meds! Good luck and I’m going to sit down and pray for Parker right now.

    Barb and Michael (T21 online)

  2. Prayers and more prayers coming your way….

  3. I am appalled at what they have been charging.

    Keeping you all in my prayers and sending positive thoughts out for you.
    Love, Kei

  4. Amanda says:

    Hi. I have been reading for a while and I just wanted to let you know that I am praying for Parker, you and your family. I hope all goes well and I will be checking back as often as I can.

    YES! The cost of health care is insane. I wish that someone would take notice and try to do something about it.

    Amanda

  5. Im praying for you and Parker.
    It is crazy what they are charging you. Do they think that people are just made out of money and thats its not an issue. Just crazy!

  6. Rebecca says:

    Seven dollars. For a can of Pediasure. That’s HORRIBLE.
    Your poor little baby. I’m praying for him.

  7. I agree – highway robbery – ughhhh Praying for Parker and wishing we could come see you – but we have a nasty diarrhea thing going on, and I don’t want to bring it up to add to your pain! Brady’s been gushing for 2 weeks now – so much for my grandiose potty training plans….

    Keeping Parker in my prayers during these many tests, I am hoping and praying that you will finally get some definitive answers!

    Hugs and smooches and stones from Brady to Parker!

  8. I am hoping that some good news comes out of all those tests and he makes it through them smoothly as possible.

    I can’t believe what they’re charging you! How in the world do they get away with that?! I am not even sure how they can even justify charging that much for one can!

    Keeping Parker in our thoughts and prayers.

  9. Rebecca P says:

    It’s insane what they are charging you…highway robbery. My goodness.

    You know I have insomnia big time, so if you need to talk on one of those lonely nights, please feel free to call me.

    Keeping Parker in our thoughts here. (((((hugs)))))

  10. I’m praying for Parker and for your family. I am praying for everything to be “fixable” and that God will lead the doctors who are caring for Parker so that he can be healthy!
    In His Love and Blessings,
    annb

  11. The prices are outrageous to say the least… Miss T had the ped on call come in to check on her after hours when she had her tonsils out… Miss T fussed when the ped tried to “hear her heart” so ped says…”oh I hear you are a feisty one, I don’t want you to get upset”…..that charge for her to come in was $208.36 for less than five mins….. :|

    Praying Praying for ya :)
    Kim and Miss T

  12. I can’t imagine what you all are going through… The hospital can be a difficult place to be. Good thing most of the nurses are so great at PCMC. It is too bad though that it costs so much to do these critical things for Parker. Keep your heads held high… you are doing great with this little guy. I am sorry Parker has to go through so many trials.

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