Thursday

Parker’s ENT wanted to see our little guy today. Here’s the scoop:

Parker met with his ENT today.

The results:

He is now on Cefpodoxime one of the ENT’s “Big Gun” antibiotics.

They did a blood draw to check out his Quantitative Immunoglobulins, IgG IgA, IgM, IgE.

In other words they are wondering if he was even born with an immune system at all.

We go back up for a Sweat Chloride Test next week. This test checks for CF.

He will be scheduled for a sedated MRI to see if there is anything in his upper airway that needs to be ‘tacked up’ or ‘reduced’ that may be blocking his upper airway.

The ENT told us that since so much of Parker’s PH is tied into his upper airway issues the time is approaching when we may need to trach him in order to circumvent these issues. There is going to come a day when his BNP and PH levels skyrocket and we won’t be able to reverse them. Plus he is worried that one day Parker might throw a mucus plug that I can’t dislodge and that would be the end of one little Hodson kid.

I will call tomorrow and let the cardiologist know what the ENT is thinking.

I don’t think we will make the heart cath this month either.

I will say I had a moment of public panic when the word trach was mentioned. I’m not a nurse. I bawled today when they totally bungled the blood draw for Parker. I am scared to death to be home alone 24/7 with a kid that has to rely on a trach to breathe. Although he said that it would be closed off during the day and open during the night? huh? I’m an idiot about stuff like this. I’m scared spitless that I will do something wrong that will do major damage to Parker.

I mean how many bags, tubes, cords and bells does one little 19 pound 2.5 year old need to have hanging off of him?

I am so thankful for Reed. Having him there taking the lead today was wonderful. It was even okay that he teased me all day long for bringing up my camera to take pictures. Taking pictures helped take my mind off the stress and worry of a BNP coming in at 892.

Wanna see ‘em? :)

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On our way up……….

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Parker letting us know just what he thinks about having to be weighed.

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Waiting for the ENT.

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The bunny Parker was given for being so brave while undergoing torturous events while at PCMC. Parker was less than impressed, lol!

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Where Mom and Dad stop off for a much needed Dr. Pepper over ice. It’s a great place to get a soda but you wouldn’t want to eat there.

Parker’s cardiologist just called to see how Parker was doing. This is the ONLY doctor that has done that for us. Dr. Day is our “go to” man. NOTHING happens to Parker unless Dr. Day is aware of it and gives approval. Without this man I don’t believe that Parker would be here today. By the way, it is 9 P.M. here and Dr. Day still calls.

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 with Parker, that bunny would offer no consolation for the torture if it were me.

    Tammy, whatever must be done, you can handle it. But you know that. However, I understand it will not be easy, but remember God is with you and with Parker. He has a purpose…although it seems so unfair…for what Parker endures. I know that Parker is a blessing to me…and so are you. Having said all of that…I pray it would be God’s will to heal Parker and let him run and play and laugh and breathe like every other healthy child.

    Love ya.

  2. I am so sorry. I wish there was something to say to help take the stress away. Please know that we are praying hard for him. I have know little ones with trachs and they were pretty mobile. I understand though what more can he have hanging around him and still have independence and normalacy, for both of you. I get it.
    Again you and Reed, well the whole family are thought of often here.
    (((BIG HUGS))) to you all
    Kim and Miss T :)

  3. Me again… :)

    I read the post again and thought You probably didn’t think you could do the things you already do for Parker before you did them. If the trach has to happen You will do fine with it. You are such a STRONG woman and FABULOUS Mom! and a GREAT ADVOCATE for your kiddos. You can do this!!!!
    Oh and I am a picture taker too at appts. LOL
    Kim and Miss T

  4. Rebecca says:

    I’m so sorry for all of the fear and worry. There aren’t any words, really.
    Parker and The Baby love getting weighed equally, I think.

  5. I am so sorry for all Parker is going through and the stress it puts you through. You are a very strong woman, and I think you will be able to handle the trach if it comes to that. I know it’s hard though. I’m so glad that the cardio is so great – it’s nice to have someone supportive like that in the midst of all your worry. We are praying hard for Parker and your whole family.

  6. Trisomymommy says:

    Yeah, that bunny doesn’t really do much for me either. I’m so sorry for all that Parker is going through. Hang in there little guy! We’re cheering for you over here.

  7. That sucks. Sorry, but it does. I hope they will be able to find the right thing to REALLY help your little guy out! I’ll be praying for you AND the doctors that they will know what to do…

  8. Kim said exactly what I was thinking, Tammy. I know you can do what you have to do. I didn’t think I could test Cameron’s blood sugar and give him insulin shots either. My hands literally shook and I know by comparison, it’s nothing. But it doesn’t even faze me now. We do what we have to do and somehow, God gives us the courage and strength to do it.

  9. Still praying!
    annb

  10. Chris says:

    Hugs.
    I love the pic of Parky in the carseat.

    Chris

  11. LeeJo says:

    Hugs for Parker and Mommy!

  12. You know you’ve got my prayers Tammy!

  13. Just seeing the picture of that cafeteria makes my stomach go in knots. That is where we spent the hour when we got kicked out of the PICU each day. BLECH!

    That pict of Parker in the carseat is too cute. Quite the smile.

    Isn’t Dr. Day awsome! We just love him too. What a guy!

  14. You know… The Kid’s heart specialist was like your Dr. Day. Must be in their “breed.” :o )

    The neurologists were the worst. :o (

    Still praying!