Another Night at the PCMC

We got partial results back from the MRI.

Seems like Parker’s total upper airway likes to fall into itself when he sleeps. We knew his trachea would do this and his bronchi too. But now we know that the extent of his super floppy airway is so much greater.

When you add into that the also new discovery that Parker’s tongue is falling back and covering what is left of his airway and you have one whopping scenerio for pulmonary hypertension.

But even in the midst of this news we have a ton to be thankful for. Finding out this information tells us that Parker’s Pulmonary Hypertension has a CAUSE that is FIXABLE. Many children with Pulmonary Hypertension don’t have the blessing of having a treatable cause for their PH.

We still have the worry over whether or not Parker’s lung vessels will be able to grow enough to service Parker’s body as he gets bigger. But that is a worry for tomorrow. Today we spend being thankful.

So, we are incredibly, beautifully, wonderfully blessed.

We are going to continue to use Parker’s CPAP but add a medicine that will help him sleep a good eight hours a night and keep that CPAP on for the same amount of time.

In a worse case scenerio they could go in and make Parker’s tongue smaller. While there is a new technique out there for doing this, it is still a very painful procedure and recovery. And there is a chance that as Parker’s grows his tone will improve.

They want us to stay and see Immunology. Parker’s IgM is low. It is pretty unusual for one’s IgM to be low. We need to find out what we can do to raise this up and thus help Parker fight long term infections (such as sinus) better. Getting sick so much is wrecking havoc on his poor little body.

Cdiff is still in full force. Still need to get his stoma checked out.

Bottom line is that Parker is a bit of a mess. :)

But he is our very much loved and adored mess. He is cherished and wanted and nothing less than a blessing.

Some blessings just come in packages that are a little more tattered than others. But the gift inside is no less precious and no less valued.

About Tammy and Parker

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

Comments

  1. So glad there is some good news for you and sweet Parker!!! I just wish you all didn’t have to go through so much agony!

    Sending you {{{hugs}}} and prayers!!! (And I linked to you in my Tackle post tonight.)

    I sure hope tomorrow brings more good news. Talk to you soon – and if you ever need someone to talk to, make sure you call ok?

  2. What a fighter…him and you. God must have something pretty amazing in store for his little man. God bless.

  3. AMEN!!! Great news! All is fixable…I love the last statement……very sweet. May use it sometime, with credit of course? :)

  4. Isn’t “fixable” the sweetest word you ever heard? Good, good news!

  5. Oh I’m so glad that you have gotten a bit of good news. Fixable is a great thing. I hope things continue to work out this way. Still praying here!

  6. Yay for the fixable!!!! Continued prayers and positive thoughts. And a more adorable gift of a bit of a mess I’ve yet to see.
    Love ya sweetie!

  7. Sooooo happy to hear this Tammy!!! Hopefully the medicine and cpap combined will really help Parker’s PH – fixable is WONDERFUL!!!!!

    Praying that it all works and you get good immune info so Parker can be well and grow and come and play :)

    Love ya!

  8. I’m so happy to hear the MRI was successful in getting you some answers! How great that you know what is causing the PH and that it’s treatable! Praise God! and continued prayers for Parker!

  9. Don’t you just love it when doctors have ANSWERS!?! So glad that they are figuring a few things out… hopefully the trend will continue!

  10. Chris says:

    I have soooo many questions (who, me, lol), but I’ll give you space, lol. I think it sounds like a good plan though.

    (((Hugs)))

  11. I am so glad to hear that you have gotten some answers. I hope and pray that this may be a big turning point for Parker. He and Michael were sure meant to be buddies. Michael has the floppy and narrow airway and we did a round with c-diff too. That was not fun at all but responded well to treatment. Waiting for the post that says you’re outta there. Keeping you all in our prayers. Sending Parky a big HUG.

    Barb (T21)

  12. I’ll second Kim’s AMEN! Good news!

    Continuing to pray!

  13. LeeJo says:

    Tammy, I am just catching up and am so excited that you are finding TREATABLE CAUSES!!!!! Praise God, and we are still praying that all the treatments work!

  14. Yeah!!! Amen!

  15. I love your heart Tammy! You are such a good mommy to Parker. I will keep praying!

  16. Im so glad to hear it is treatable. Im praying for your little guy tonight.

  17. Beautifully said! Sometimes the most tattered packages turn out to be the best and I think you have one of those! Still praying for Parker and family.
    annb

  18. I am so sorry I have missed out on sending you good vibes for the last few weeks. I just started catching up today. Give Parker a big hug from me and Vince and I am so glad you had some good news today!

  19. My little guy had the tongue reduction surgery (partial glosectomy ?) at 18 months. He recovered quickly. Glad your son’s condition is “fixable” …

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