Help me sort this out?

One of the hardest things about being the Mom of a medically fragile child (besides trying to convince your local Legislative Representative that more cuts to Medicaid Waivers will wind up killing your kid) is trying to discern the path to follow and decision to make concerning medical treatment.

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Parker has gained enough weight to move up in the size of cloth diapers he wears! Now to save up the money to purchase him some more.

I thought we had a plan in place.

We would wait until the results from Friday’s FEES test were known.  If Parker showed that he was still aspirating on his spit, then we would proceed with partially pinning down his epiglottis.  We would skip the botox based on the theory that a permanent  problem required a permanent solution.

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ENOUGH with the pictures, Mom

Well, on Friday we discovered Parker doesn’t really swallow.  Everything just kind of slides down his throat, directly into his lungs.  For most of us this would bring on a fit of coughing.  But not of our Hero.  He doesn’t protect his airway.

The inflammation around Parker’s voice box and epiglottis has healed.  This is good news.  This means that the Nissen was not only needed, but has been doing it’s job.

So, on to the pinning of the epiglottis, right?  This will not only protect Parker from aspirating on his saliva, but also allow him to start learning how to eat by mouth.

Not so fast.

The Pulmo disagrees.

He feels that by pinning Parker’s epiglottis partially down, his chances of ever losing the trach will also decrease.

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My job is to be his advocate.  To make decisions in our Heroes best interest.

I gave up hope of Parker ever losing the trach long, long ago.

And in the grand scheme of things, a trach is not that big of a deal.

But the Pulmo believes that the results (the terrible results) from Parker’s last echo were not true and should be disregarded.

He believes that we should address the aspiration using botox and meds.  This will leave the possibility of decannulation open.

He believes that after the aspiration is addressed (along with the positive effects from the Nissen) and Parker has another heart cath, we will see improvement in his numbers.

After seeing Parker walk into this appointment holding Reed’s hand, hearing all the stuff he is now doing, the ENT now agrees that the last cath results should be thrown out.  Before he didn’t think they could have been that much off.

( I know, Chris.  I know. I’m just sharing what was said.  My hopes?  Not up.  I swear. Pinky promise.)

Pulmo points to Parker’s last x-rays where his heart is now normal in size and his lungs look better than ever.

The ENT agrees with Pulmo saying this is a reasonable first step.  If it doesn’t work, then we revisit surgery.

Except, deep down in his tippy toes, the ENT doesn’t believe this will work.

And neither do I.

I’ve heard some horror stories in regards to botox.  I also know it has the potential to backfire.

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sigh.

We are going in for a second opinion with another pulmo today.  I also want her take on Parker’s wonky heartrate.  I want to make sure she also feels it is due to aspiration issues.

Bottom line is that the aspiration MUST be addressed.

And I could use some new, outside of the situation, insight on the issue.

Your insight to be exact.

Cause mine is all dried up.

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 sure wish I could lend some insight but since I have never been through something like this I’m no good at that. What I can offer is prayer, as I always have :)

  2. There are always risks to any medical procedure, and I hate every stinkin one we do. Much though it pains me to say…

    …I’d go for a short term solution first and see if it improves things.

    We have always been told that the key to “fixing” PH is growth. Bigger lungs with new healthy tissue, a bigger heart with new healthy tissue to support the old. And I gotta say…it’s true, as far as I can tell, because Alex has gotten progressively better as he’s gotten bigger. Obviously, he’s had less interim damage than Parker, but growth to support better lungs is important, and if it were me, I’d want to not block off potential ways out of a trach if I didn’t have to.

    I’d also ask around on the trach board about who to see for a second opinion. There’s a ton of experienced people there who might have suggestions.

  3. What a sweet little boy. He doesn’t deserve to have to deal with so many medical issues! :( And I’m afraid I don’t have much to suggest, except for relying on much prayer and inspiration. Hang in there, Tammy. I can imagine it’s wearing you down physically as well!

  4. I have no insight! But Parker is in my prayers!

  5. tammy, i have no insight in this area. i know that you are an amazing mother who is an awesome advocate for your precious parker…..he is so blessed to have you! hugs for y’all, and i’m praying for y’all. may God give you the wisdom and discernment that you need. parker’s pictures are wonderful! he is so cute!

  6. Caroldean says:

    I have a deep fear of aspirations. My niece died from a rare form of pneumonia due to aspirating on everything for years without anyone knowing. I would think that aspirating would be of concern, but I don’t know if it is more of less then any of the other issues.

  7. Sorry – No insight on the medical stuff, but I do know loads about cloth diapers if that helps!
    Does Parker use Fuzzi Bunz? And if so what size is he? We have a stack of large ones that we would be happy to pass on.
    And hats off to you for using cloth with all the other stuff you have to juggle. I am seriously impressed, and Parker is one lucky little man.

  8. Elise says:

    No experience there for me, either, but I too will pray!

  9. I think I agree with the person that said the short term answer. She said exactly what I was thinking. PH will get better as he gets bigger and stronger, and if the esophagus is healing, and his lungs look good, don’t do something drastic!

  10. sandee mills says:

    After my experience. We had botox injected into Storey when she was in the PICU, it helped her not drule. I don’t know how they will use it for him. But deep down you know what is best for Parker, he will let you know and you’ll know when you have the correct answers. He looks really good from the photos.

  11. Get a blessing. You need one. Reed needs one. Parker always needs one. Let us know when it happens and we’ll fast for you (those who believe that) and pray for you/think good thoughts.

    Big faith that Heavenly Father has a specific plan for Parker. He will guide you through this.

    • Can you tell me what you mean in the statement “Get a blessing”? Never heard it before. Sounds wonderful.

  12. I have never been through anything like this nor am I familiar with what you are going through, but I do know that Parker is very special and your family is very lucky to have a graet Mom like you. You are an amazing person.

  13. Hmmm, what a tough one. If the risks of the botox are worth it, I think I might try that first. But, I don’t know what those risks are or what the chances of a positive outcome are weighed against those risks. Why do they think he doesn’t swallow? Is that a missing learned response he can gain or is it a muscle issue that is causing it? if the muscles don’t contract to move food and liquids down to the stomach, then how will either approach give him a chance at eating by mouth? Sorry, I’m a scientist by trade and am always full of questions!

    P.S. I tried your pizza sauce and Holy Cow is that some wonderful stuff. I made a huge batch and have it frozen away for future uses. Thanks!!!!

  14. wow tammy, you know me, I know nothing about any of this stuff!! but i do know parky is as cute as ever :) go with your gut… its usually right!

  15. You are speaking a totally different language than I know. I’m only trained in “poopology” at this point. I will ask God to give you the wisdom you need to make the decision and peace to go along with that. Parker’s Mom Rocks!

  16. I’m not sure I qualify as ‘new, outside of the situation’, lol! You know how I feel about the pinning and I haven’t changed my mind.

    I’m sorry I still didn’t make myself clear re: the last cath. The anesthesia screwed up and I don’t believe the results, either. BUT, I’m just saying, let’s treat Parker, not numbers. If his cath numbers are bad, so what as long as his functioning is good? I don’t want you to grieve over numbers on a paper and what they ‘might’ mean when Parker looks great. That’s all. I’m very sorry again that I phrased it so poorly and caused you any upset.

  17. Csmith says:

    You have all my sympathy! The hardest decisions to make are the ones about your child’s health. When my daughter was a newborn I had to decide whether to have jaw distraction surgery done ( scary, involving cutting bones, screwing in metal plates and having metal posts protruding from your sweet baby’s face for months) or to instead have a trach. We did the surgery and I’m (almost) sure it was the right choice. One thing I found helpful was to ask the doctors ” if this was your child or grandchild or niece, what would you really do” sometimes I got surprising answers that came from the docs gut instinct and not just from textbook procedure.

  18. Hi Tammy~ Just dropping in to see how Parker is doing. I continue to pray for your family. You are a warrior, but I know even superheroes get tired. I am sending virtual hugs your way!
    xo~Dale

  19. It is lovely to meet you and your wee mania just gorgeous!
    You are right- you are the advocate & the mumma’s heart is usually right.
    It is so tough when you get different non definitive answers from drs – so frustrating and exhausting. I suspect you are not getting clear decisions because there just may not be a definitive answer which is so hard. I am praying for you and that you get real discernment, wisdom and peace about what you are to do.
    You are one strong mumma, I hope you are taking time to nurture yourself too- don’t get worn out, biggest hugs xo

  20. Nope- silly auto correct! Trying again without typing and fixing a nappy disaster!!

    Your wee man is just gorgeous!!

    Though there is alot of mania at our place today!!

  21. Basekamper says:

    Hi. I cannot advise what decision to make but I will say I agree with the possibility that any series of numbers obtained on ONE OCCASION, during ONE procedure, provide just a snapshot. The snapshot is intended to be accurate but sometimes results achieved are not a clear picture of what is truly going on. I have 2 children with trachs, both have undergone several minor and major procedures for airway & reflux or aspiration concerns. We have not used botox but I would ask you to remember to consider risks of BOTH procedures about which you are trying to make a decision. It sounds like one procedure (Botox) has minimal invasive qualities and does not prevent the other from being completed at another time if it does not work. I look at my kids and try to remember: only as special as necessary. If there is a possible easy fix for a problem, even with slightly less confidence from the doc, I move from less invasive, less complex and up. Good luck with your decisions. HUG