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.


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.


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