Days 41-42

Just as we were celebrating milestones …new symptoms have surfaced.

The painful, frequent urination that had finally started to calm down has now shifted into something new. Jazmyne is now urinating blood and experiencing severe abdominal pain. The abdominal pain started last week started mild has now turned to severe. Urinating blood comes with several concerns, especially when Jazmyne is already endured so much.

The providers continue to remind us that the BK virus can take a moment to clear. What they should have explained more clearly is that it’s often the side effects of the virus …the bladder inflammation and irritation that can take several months to resolve. That distinction matters when you’re living it day by day.

The good thing right now is that there is no pain with the frequent urination.

The acute abdominal pain has now turned into severe, chronic pain.

Last night from 7pm to 3am, Jazmyne screamed in pain has her abdomen spasmed and her stomach inflated like a balloon. Hourly morphine boluses were given. Morphine pushes every 10 minutes. Three different GI and stomach spasm medications. Oxycodone was given.

None of it touched the pain.

Last night, I had a serious disagreement with the on-call physician. My concerns arose because my child was experiencing significant pain, and appropriate interventions were not being taken. Additionally, I observed that all unit nurses were treated in a manner I believe was disrespectful by the on-call physician. My intent was not to create conflict, but to advocate for my child’s safety and well-being.

While Jazmyne was screaming in relentless pain, the on-call physician wanted to offer Tylenol. We were far past the Tylenol phase. 

Morphine hadn’t touched it. 

Oxycodone hadn’t touched it. 

GI and spasm medications hadn’t touched it.

I had to aggressively demand that oxycodone be administered.
I had to aggressively demand that the physician physically come assess Jazmyne instead of making decisions from a computer screen. The on-call physician did not want to enter the unit to see Jazmyne.

The reason given for not wanting to enter the unit was their concern about exposure from being in a common area. I had to remind them that PPE exists for a reason. This is a hospital. Protection protocols are in place so physicians can treat patients..especially in moments like this.

I even had to threaten to call ICU/ER physicians to get someone to lay eyes on my child. Only then did the on-call physician come.

And when they did, they asked me, “So what do you want me to do?”

I had to say what no parent should have to say:

I am the parent.
You are the physician.
You are paid to make these medical decisions …not me.

What I want you to do is physically assess the patient.
Review the last 24 hours and see that this pain has escalated.
Recognize that if morphine and oxycodone aren’t touching the pain, Tylenol will not either.
Order the ultrasound. Order the X-ray. Rule out what this isn’t.
Do your job.

Advocating shouldn’t require rage.
But when your child is screaming for hours and no one is moving, you move mountains.

I will always choose being “too much” over being silent.

An X-ray was finally done.

Jazmyne has an intestinal obstruction.

Even though she has been having regular bowel movements, the length and intensity of the medications she’s on have slowed everything down internally. What looks “regular” on the outside wasn’t telling the full story. She is backed up. A IV stool softener will be given to start the process of moving Jazmyne bowel thru her.

After hours of screaming pain, after fighting to be heard, there is now a confirmed reason.

An ultrasound of Jazmyne’s bladder was also done to rule out any other potential concerns that may not be visible on the surface. Ultrasound noted that the bladder is inflamed and does have blood but no blood clots. These are all side effects of the BK virus that need to pass Jazmyne body. Increasing her IV fluid intake will help flush it out.

There is relief in having an answer.

There is frustration in knowing it took that long to get one.

After everything these past few days  the bleeding, the obstruction, the relentless pain..we are leaving nothing unchecked. We are asking for imaging, asking for answers, asking for clarity.

When you’re walking through something this complex, you don’t assume. You confirm.

Another hard layer to tackle today is the issue of pain management side effects.

One of the side effects of morphine is intense, full-body itching. After the high doses Jazmyne received over the last 12 hours, the itching is back..head to toe. As if the pain wasn’t enough, now her skin feels like it’s crawling too.

And the truth is… the morphine hasn’t even been effectively managing her pain anymore.

So today we had a necessary conversation: what other options do we have?

The plan now is to begin Dilaudid and ketamine therapy while removing Jazmyne off morphine, hoping to manage her pain without the unbearable itching and without relying on a medication that is no longer helping her the way it should.

I’m not physically tired.

I’m mentally exhausted.

Exhausted from having to constantly assess Jazmyne’s symptoms.
Exhausted from thinking critically every hour.
Exhausted from having to look beyond standard BMT side-effect protocols to try to determine what she could actually be suffering from.

I am her mom. But I have had to become researcher, analyst, advocate, and alarm system all at once.

Just when you start to exhale… something new rises up.

That emotional whiplash is exhausting.

It’s not the long nights anymore. It’s the mental load. 

The constant calculating. 

The constant questioning. 

The constant need to stay three steps ahead because if I don’t, who will?

I don’t say this for sympathy. I say it because this is the unseen part of hospital life. The part where your brain never shuts off.

PRAYER REQUEST:

-Jazmyne bowl obstruction smoothly release without pain

-Jazmyne bladder release all blood without pain

-Ketamine therapy and Dilaudid bring the pain relief Jazmyne body needs

~In the Mighty Name of Jesus