Parker’s Pulmonary Hypertension: The Beginning

One of Parker’s friends asked this question:

I started reading your wonderful blog about a year ago now and in the past week it looks like my adorable niece who just happens to have that extra chromosome MAY have pulmonary hypertension. I don’t recall ever reading how you discovered this illness in Parker. Is it something he just always had? Or did it start one day? If its the latter, can you tell me how it was diagnosed and what you saw.

When Parker was born we were told that the very last thing we needed to worry about was his heart. Yeah, there were a few holes, but nothing to be concerned about or would need any kind of invasive surgery.

There was a mention that Parker may have a bit of a residual type of PH that many babies have after birth, especially preemies. But they did another echo and nobody was concerned at all.

Wow! we kept thinking. That was a huge blessing…..and what a major bullet to have been able to dodge. A colostomy is nothing compared to open heart surgery.

When Parker was three months old, he had surgery to release a tethered spinal cord. After his surgery I noticed that his oxygen sats would drop down to 85, which was something that never happened before.

His sats started dropping while in recovery and were still dropping into the afternoon. By then I asked to see the surgeon because I knew this wasn’t right.

I got the resident neurologist that had done the surgery under the supervision of the head Neurologist.

This resident kept telling me that Parker’s low sats were due to the surgery and me not holding him upright after the surgery. Except, if you know about tethered cords, you know that you CAN’T pick your kid up afterwards.

(The resident hadn’t put this into Parker’s post op orders either. It was the head Neurologist that told me this before Parker’s surgery. This whole situation lead to us having a document put into Parker’s file stating that NO ONE but the head dudes ever work on my son. Teaching hospital or not. )

My Mommy instincts were screaming that something simply wasn’t right. The resident was telling me that I didn’t know what I was talking about.

I demanded to see the Neurosurgeon. He came immediately. After explaining the situation he looked at his resident and told him loud enough for even the nurses in their stations to hear, “You ALWAYS listen to the Mom. The Mom knows more than any of us about what is normal and what is not for her child.”

My first lesson in hospital advocacy.

An echo was immediately performed.

Severe pulmonary hypertension. Life threatening. Of the not going to make it through the week variety.

Just writing those words brings back so much fear.

Later, after a right heart cath, we discovered Parker’s numbers rang in at a whopping 117.

Under 25 is normal.

I will be perfectly honest. The Pulmonary Hypertension is our greatest fear. We have been able to bring it down to about 68 without meds. Medication brings it down a bit more, but not to normal levels.

We pray and fast for his numbers to reverse.

If your niece’s doctors think there may be a chance that she is developing ph, I would get her in to see an ENT, and a sleep specialist. Upper airway issues and sleep apnea are giant causes for PH in kids with Ds. And these are ‘fixable’ issues. Parker’s trach has been nothing less than a life saver.

Literally.

But something as simple as tonsil removal or a c-pap could be all that your niece may need to solve any PH issues.

While we are on the subject of procedures, can I ask for prayers for Parker on Wednesday?

On Wednesday Parker will undergo a pretty invasive scope for which he will need to be put under a general for. They will be going in through both of his stomas, as well as up through his teeny tiny designer hiney.

Yeah. Ouch.

We are trying to find the cause of his very abnormal bleeding that he does from his lower stoma and his tush. Parker can’t be connected back up until we discover the cause of this bleeding.

The last thing we need is to have this bleeding from his lower stoma to happen internally because we hooked him back up not fixing the problem.

I’m pretty sure the last few weeks of me feeling so rotten has to do with the bit of stress and worry I tend to experience before a procedure that could bring us potentially bad news. Sleep tends to elude me when I am freaking out ……….ah…..contemplating these sort of issues.

Kids with significant PH have a MUCH greater chance of not holding up well with under anesthesia. And that has been kind of Parker’s history. How we found the PH in the first place.

Worry. No sleep. My immune system goes to heck in a hand basket.

Add this to the worry of how to pay for everything, and Reed and I are a mess.

So, if you would keep our Brave Hero in your prayers, we would be very grateful.

About Tammy and Parker

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

Comments

  1. We pray for you and your family every day. Wednesday will be no exception…we’ll add an extra one :)

  2. Tammy – have I told you recently that “I love you”
    Of course I haven’t ;)
    You are amazing, and thank you SOOOOO much for that info.

  3. Always in our prayers,extra on Wednesday.I don’t know if you check on little Sheena in Australia over at gearytime.blogspot.com but it seems as if she may very well be developing some PH.Maybe a word of encouragement from you might ease her worry a bit.Just a thought.Prayers if nothing else.She’s such a little doll!

  4. You got more prayers coming your way. Poor Parker. :(

  5. kaylene says:

    We will definitely be saying prayers for Parker on Wednesday. He is in our thoughts and prayers every day.

  6. Ryan was just asking last night about little Parker! We checked in, but I told him you weren’t feeling well!

    We will definitelly keep Parker, you and your family in our prayers!

  7. We will definitely be thinking about and praying for you on Wednesday.

  8. Moms ALWAYS seem to know when something is not right. Good for you for sticking with it. Good luck on Wednesday!

  9. Oh Tammy…
    Your family is always in my prayers. BIG hugs to ALL of you.
    Amy

  10. Hang in there!!!! I really hope that you can get the answers that you are looking for and that they are good answers.

  11. I have been praying for you a lot lately and I will continue to pray, especially on Wednesday. I understand the stresses of having a child who continually has “issues” and you can be sure that I have lots of empathy for you, but more importantly the prayers from someone who has been there before.

    Love in Christ,
    Suzi Searles

  12. I pray that on top of everything else that you will not have to worry about how to pray for all of that! I want the Lord to come through for you in an amazing way! You have enough to think about without having to be concerned with money as well. I’m going to be praying that some kind of financial miracle will happen where medical bills will never been a burden again!

  13. Prayers coming your way! Hopefully they will be able to find the problem and fix it without any other troubles!

  14. Moms definitely know best ;) Praying for Parker, hoping the appointment and procedure go well. Hope you’re feeling better too – and that maybe just maybe you can catch a bit of sleep here soon!

    Hugs,

  15. Marilyn - A Mixed Bouquet says:

    Continuing to pray! I remember the years of medical fragility so well. Those first five years were so rough. My son was diagnosed with PH during his six months in NICU. It was a scary time. Praise God it was resolved. I remember the docs telling me about “the fork in the road” and how no one determines which direction. Well, I knew the One who can determine it!

    Praying!

  16. I am praying for you and your family. I will pray especially hard for tomorrow to bring some answers for you!! Your little man is very brave and strong!!! Your recount of finding out about the PH gave me chills. I am praying for those numbers to go down and his weight to go up. I am praying for rest for you. :)

  17. I just wanted to let you know that I have added your family and especially Parker to my MOPS (Mothers of Pre-Schoolers) prayer list and my Bible study prayer list. My Bible study meets tomorrow and we will pray very hard for Parker tomorrow.

  18. Prayers for you, your husband, and Parker.
    Our God is bigger than our problems – He sees the whole picture and the before and after. He is more than enough to see you through it all.
    Praying for peace and sleep and health for all of you.

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