Mito Mighty Kaden

12/06/2025

Today’s update:
After a very scary evening with extremely high fevers, Kaden is doing better today—still sick, but more stable. His temperature is currently 101.7. Because of his previous lung issues, it’s harder for them to assess things fully, but his chest X-ray shows focal fluid pneumonia in the lower left lobe, along with possible viral or bronchial pneumonia in both lungs. All of his viral tests—RSV, COVID, and flu—came back negative. The team said they’re not planning to run further viral panels since he needs antibiotics either way.

They started antibiotics as soon as we arrived at the hospital, and they do seem to be helping, especially with controlling his fever. We didn’t get out of the ER until after 3:30 a.m. because they were so busy and there wasn’t a room available earlier. Kaden is in isolation and will likely stay isolated due to all the illnesses going around right now.

We’re praying he continues to improve. It’s absolutely heartbreaking seeing him feel so bad.

10/31/2025

Thank you to all the doctors and nurses who have literally run to help my child.

Thank God we haven’t needed it often, but when a rapid response is called, it’s truly a matter of life and death. We’ve seen you rush into the room — out of breath, disheveled, trying to quickly regroup — and it’s every part of the team: doctors, nurses, respiratory therapists, ICU staff sprinting from another floor (sometimes getting stuck in the elevator!), pharmacists working fast to find the right medication that won’t trigger allergies, the adult care team stepping in when pediatrics isn’t available, all racing to get to him as quickly as possible, and even the chaplain arriving to offer comfort and prayer.

Kaden has had two rapid response calls in his life — two urgent moments that brought an entire team together to stabilize him. We will never forget your dedication, speed, and compassion.

We see you. We are so deeply grateful for you.

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10/23/2025

Busy, busy day for the Huddlestons!�We had an early start this morning with a cardiology appointment. Kaden has been seeing the same cardiologist once a year since he was just a year old. Some years required more frequent visits, but thankfully, his heart function has remained stable over time. We’ve learned so much throughout this journey, and today was no exception.

This visit was moved up from his usual annual check because of concerns about his windpipe and the possibility that his heart might be pressing against it. Pulmonology and cardiology had already consulted with each other and agreed to do a repeat echocardiogram to get a closer look at his heart and surrounding structures.

The bigger challenge, though, continues to be Kaden’s spine. It’s severely curved, which puts pressure on his organs and causes them to shift. The doctor explained that even if his heart is pressing on the windpipe, surgery would be an absolute last resort. It would involve opening his chest to reposition the heart—with no guarantee it wouldn’t move back over time. It’s a complex surgery with uncertain results.

He also explained that the procedure would require several weeks of intubation, and there’s always a risk that Kaden might not be able to come off the ventilator afterward. Because of that, the doctor doesn’t want to put his body through something so intense unless it’s absolutely necessary.

Since they were kind enough to fit us in today, we saw the doctor before the echo. He’ll review the images and let us know what he finds once he’s had a chance to go over them. He said he may consider a CT scan of the heart just to see the surrounding areas better, but he will let us know.

We also talked about Kaden’s heart rate. It’s been running a little lower lately, and sometimes his blood pressure dips too. The boy and his dramatics! It wasn’t that long ago we were working to slow down his high heart rate, and now it’s doing the opposite. Kaden sometimes has bradycardic episodes, where his heart beats more slowly than usual. But the doctor is not too concerned—as long as Kaden stays well hydrated, his capillary refill looks good, and his heart rate and blood pressure don’t drop at the same time, he’s doing just fine!!

I believe in honesty and transparency and if I am being honest some days, it feels completely overwhelming trying to make sense of this medical world. Life just isn’t fair sometimes, and as Kaden grows older, his body keeps changing, making everything more complicated. We’ve been part of this medical journey for so long, and today it’s really taken a mental toll. Maybe it’s the lack of sleep or the constant daily stress, but I just feel tired.

Today wasn’t a bad day—it was simply another day of trying to step back and see the bigger picture, only to be reminded of how complex his body really is. I wish there were an easy fix, but sometimes that’s just not possible—and that reality can be so disappointing.

But I also know that God is with us every day, and we’re not walking this path alone. With that said, we are good. God is good all the time. He really is!!

09/23/2025

Kaden had his follow-up appointment with Pulmonology yesterday. I didn’t realize it would take so long, otherwise I would have been there too — but we divided and conquered. The boys went downtown and took care of it.

Several months ago, Kaden had a CT scan of his lungs. A CT scan uses multiple X-ray images to create detailed pictures, which can show changes in structure and function. Shawn took photos of the areas of concern from today’s discussion to share with me. When looking at these scans, you have to imagine viewing his body from head to toe, which takes some effort to process.

Findings and Discussion:

1. Spinal alignment: The scans show that his spine is not ideally aligned, which does not help with his lung function. However, the positive news is that this is a common issue, and despite it, his lung function remains good. His oxygen saturation is normal, and his lung exam sounded clear.

2. Airway findings: The more concerning issue is mild narrowing in the mid-trachea and dilation of small airways. On one of the CT images, a circled area shows three small openings where there should be one round airway lumen. The doctor believes this may be the result of scar tissue from one of his previous episodes of pneumonia. This abnormal appearance needs further evaluation.

Next steps:
• The pulmonologist would like his cardiologist to obtain additional imaging during his next echocardiogram, specifically to better assess the mediastinal vasculature (the major blood vessels in the central chest) to see if they are compressing the trachea or esophagus.

• She noted the following from his CT (dated 6/2/25):
“On series 3, image 42, there is nonspecific narrowing of the trachea. There appears to be crossing of the right brachiocephalic trunk on series 3, image 42.”

• If the echocardiogram does not provide sufficient visualization, she recommends considering a CT of the heart and chest to evaluate for possible vascular compression at the mid-trachea or esophagus.

• She also mentioned that if Kaden undergoes a procedure requiring intubation, they should be informed, as it may be an opportunity to perform a bronchoalveolar lavage (BAL). A BAL is a procedure in which fluid is introduced and then collected from the lungs to test for infection, inflammation, or other abnormalities

Now you know what we know and I have this information saved.

08/06/2025

There are currently several concerns regarding Kaden’s health.

1. Seizure Control:
Kaden has been experiencing multiple small, brief seizures—mainly at night or in the early morning. Just this morning, he had five episodes. About six weeks ago, we discussed with his doctor the possibility of starting a ketogenic diet, which is sometimes effective for managing seizures. Unfortunately, Kaden has experienced significant weight loss—nearly 20 pounds—which is not what we intended.

There is concern that his body may not be absorbing the necessary nutrients, raising the possibility of “failure to thrive.” His nutritionist shares this concern. Today’s appointment was a crucial one. Had he lost any more weight, we would have had to discontinue the keto diet. Thankfully, there’s been a small but encouraging improvement. After some recent adjustments to his feeding recipe, his weight has increased from 77.2 lbs to 79.8 lbs. We’re relieved by this progress!

His neurologist, however, does not want to make any changes to his current medications at this time. Kaden is currently on four anti-seizure medications and is not yet fully in ketosis, so seizures are still expected under these circumstances.

2. Heart Rate Concerns:
Another issue is Kaden’s heart rate. It has been dropping to levels lower than we’ve ever seen—frequently dipping into the 50s, which is a new and concerning development. He has a cardiology appointment scheduled for January, but in the meantime, his neurologist will consult with the cardiologist to determine whether this drop in heart rate is safe or requires more urgent attention. It feels like we’re constantly moving from one extreme to another. A resting heartbeat in the 50’s is not always a cause of concern. Athletes who are physical fit usually have heart rates in the 40s and 50s but Kaden is no athlete.

3. Pressure Points and Weight Loss Effects:
Due to his significant weight loss, Kaden’s tailbone has become noticeably bony, which is a serious concern. As explained today, once pressure points begin to develop, it indicates that the body is struggling from the inside out. After sitting in his wheelchair for less than an hour, we start to see visible pressure areas—particularly around his coccyx and left buttock.

His pediatrician is deeply concerned. If a pressure point breaks through the skin, it becomes an extremely difficult issue to manage. Her words, “it is a hard and almost impossible uphill battle once the skin breaks down” To help prevent this, we urgently need a customized seat for his wheelchair to relieve pressure appropriately. Referrals are being submitted, and once insurance approves it, we’ll work with DME to get Kaden properly fitted.

In the meantime, I’ll need to order pressure point bandaids (for lack of a better word) out-of-pocket. Wound care cannot authorize a prescription for them unless an actual wound has developed. Proactive care is not in the vocabulary of insurance approvals. Eye roll. Sandra Huddleston

06/20/2025

Kaden had a relatively good night and appears to be improving. One of his blood cultures returned a gram-positive result, but both the medical team and we believe this is likely due to contamination. As a precaution, the doctors have started him on vancomycin, a broad-spectrum antibiotic effective in treating sepsis.
To be thorough, they are repeating the blood cultures using samples from both his port and a peripheral line. Since cultures require a 48-hour observation period, we expect to remain in the hospital for at least a few more days.

Kaden is still on oxygen, and we are working to wean him off again. Once he is stable on room air, a follow-up chest X-ray will be done to confirm that things are continuing in the right direction before discharge.

06/19/2025

Quick update on Kaden:

Kaden spiked another fever last night. Although all of his viral panels came back clear, we had agreed that if his fever returned, he would get another chest X-ray to rule out any concerns. The latest X-ray shows a “possible PNA,” which could indicate pneumonia. The left lung appears slightly hazy, showing some opacity. There’s also a possibility of atelectasis, which could mean a partial lung collapse.

Based on this, the care team has started him on antibiotics in hopes that we’ll see improvement soon—ideally, right away. This morning we were able to wean him down to half a liter of oxygen, but unfortunately, he’s back up to 2 liters now. So we’re monitoring closely to see how things progress.

He currently has quite a few doctors assigned to this hospital stay: pulmonary, neurology, a keto specialist, his outside clinic nutritionist, and his regular rounding doctors. It’s a team effort right now.

They’ve also increased one of his anti-seizure medications due to a recent uptick in seizure activity.

We’re in the process of transitioning him to a Modified Atkins/Keto diet. He’s not yet in full ketosis, but the goal is to help reduce seizure activity as he enters that state. We’re working closely with the nutritionist to increase his caloric intake while still aiming for ketosis. Since starting this transition, he’s lost nearly 8 pounds, which is definitely not the goal.

We’re hoping tonight and tomorrow will be better—hospital life is tough, to say the least.

04/08/2025

Kaden had two seizures this morning—one lasted around 15 seconds and the other about 45 seconds. While they weren’t long, they’re still seizures nonetheless. And that’s just what we happened to catch. It’s hard not to wonder how many more might be happening that we don’t see or hear. Thankfully, he already had a Teledoc appointment scheduled with his neurologist today. I sent her the videos and a log of his seizure activity since we increased his Keppra.

After reviewing everything, she expressed some concerns. Increasing any of his four anti-seizure medications could overly sedate him and potentially worsen his muscle weakness. Since he’s already struggling with swallowing, she’s hesitant to increase doses or introduce anything new.

She believes his frequent coughing and the ongoing struggle to manage saliva or mucus might be contributing to the seizures. So we talked through some alternative seizure management options.

The first is the VNS (Vagus Nerve Stimulation) procedure, which involves implanting a small device under the skin of the chest that sends electrical pulses to the vagus nerve. This cranial nerve helps regulate brain activity, and the stimulation can reduce the frequency and intensity of seizures. If we go this route, Kaden would need testing to determine if he’s a candidate.

The second, less invasive option is dietary therapy. She recommended starting with a Modified Atkins Diet (MAD), with the possibility of transitioning to a full Ketogenic diet later on. Both have been shown to help reduce seizure frequency, particularly in drug-resistant epilepsy. She’s already put in a referral for us to meet with a dietitian, so that’ll be our next step.

We’ll follow up with her again in two months and, in the meantime, continue focusing on getting his respiratory issues under control.

04/01/2025

Here’s my rant for the day… Insurance companies are the worst. I get that we need medical insurance, but do they have to make everything such a nightmare?

So, Kaden has been dealing with a persistent cough and raspy breathing. Some days are better than others, and increasing his steroid inhaler has helped, but that’s not a long-term fix. Months ago, he had an esophageal X-ray, and the results came back the same day, showing motility issues—basically, his saliva isn’t moving down properly because his esophagus muscles are weak. His GI doctor recommended trying a medication called Montegrity, which could help. The only concern is that Montegrity can speed up digestion, which is something we need to monitor because of Kaden’s ulcerative colitis.

The doctor prescribed it. And guess what? Insurance denied it. Why? Because Kaden isn’t 18. Even though Montegrity has been successfully used in pediatric cases, insurance still refused. It might not even work for him because of his UC, but we won’t know unless we try!

Let's fast forward just a little bit—his doctor’s office appealed the decision. But here’s the kicker: insurance requires our permission to process the appeal. And how do they get our permission? By sending a notice via snail mail. So I get the letter, sign it, return it to the doctor’s office for them to sign, then it gets faxed back. And just like that, the clock starts over.

Insurance denied it on February 28th. They received the signed notice on March 15th. Now they have another 30 days to decide. I even called and asked for it to be expedited—ha, what a joke. Apparently, they only expedite cases in scenarios. Here was the example of scenario I was given, a cancer patient needs medication to avoid hospitalization. Since Kaden doesn’t have cancer, they basically shrugged off the fact that he’s at high risk for aspiration pneumonia from choking on his own saliva. Their response? If they expedited it now, it would only “delay their ruling.” Seriously?
The doctor’s office called for an update, and—shocker—it’s still “pending review.” And the cherry on top? If their medical reviewer (who isn’t Kaden’s doctor, by the way) denies the medication, we get to go through another appeal by requesting a fair hearing. Absolute insanity.

I understand the need for insurance, but this process is beyond frustrating. Lord have mercy, this is ridiculous.

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03/01/2025

Today, on Rare Disease Day, I want to celebrate my incredible son, Kaden. He is stronger than words can express, facing each day with courage despite the challenges of PIGN chromosome disorder, and Leigh’s syndrome (mitochondria syndrome). His journey is not easy, but his resilience, joy, and love inspire everyone who knows him. Raising awareness for rare diseases means advocating for those like Kaden, who teach us the true meaning of strength. He is rare, he is extraordinary, and he is so very loved.

02/16/2025

Kaden had his ENT appointment this past Friday to explore possible solutions for his constant coughing and raspy voice. The doctor used a camera to examine his throat and found thick mucus. Unfortunately, there isn’t much that can be done—sinus drainage is normal, but since Kaden isn’t swallowing it, it’s accumulating. The only two solutions she could offer was either a nasal rinse which I have no idea how we are going to do this (but we will) or a tracheotomy. A tracheotomy would not be for breathing support, but to make suctioning out the mucus easier.

On another note, we received his calprotectin results, and his level is 132. While this is technically abnormal (normal is under 50), for Kaden, it’s not bad at all. For kids with ulcerative colitis, this is actually considered a good result. His levels may never be in the normal range again, so we’re taking this as a win.

I’m trying to get in touch with GI to discuss starting a new medication. It carries some risks for UC, but we need to see if it can help with his esophageal motility and allow him to swallow the mucus instead of it sitting in his throat. The last few days have been especially rough, even at night. It’s heartbreaking to hear him struggle constantly. We encourage him by saying, “Good cough, buddy,” or “Swallow Hard” but it’s tough to watch him go through this. Please pray that once he starts the medication, it works without worsening his UC. The thought of what happens if it doesn’t work is overwhelming.

I’m also reaching out to GI or hematology to request an iron infusion, as Kaden’s ferritin levels are low again. It seems like he needs a boost every year, and we can definitely tell—low ferritin affects his sleep, making him really fidgety. Ideally, it would be great if by a miracle I can get this added to his regular infusion appointment on Monday, but we’ll see.

The Bible says that when two or more people pray together in Jesus’ name, God is present with them and will answer their prayers. Please pray for relief for our little man and that we find a non-surgical solution. This struggle is so real and it’s scary.

I think we’ve consulted with all the specialists who could provide insight:
• Ortho – They support spine surgery but can’t guarantee success. Once it’s done, there’s no reversing it.
• Pulmonary – We tried a higher steroid dose, which initially seemed to help, but now it’s not making a difference. His lungs look good overall, with some mild inflammation or asthma. His ferritin is low, so an iron infusion is recommended since low ferritin can contribute to restless legs at night.
• GI – We’re going to try a new motility medication to help with his GI function and esophagus. However, there’s a risk it could trigger a UC flare.
• Cardiology – His heart looks good.
• Neurology – He’s having some seizures, so we’ve increased one of his anti-seizure meds. He’s currently on three different medications, and no one wants to add another. If increasing Keppra doesn’t work, we’ll adjust one of the other two.
• ENT – Discussing possible nasal flushing and the option of a trach.

So, that’s where we stand. Now you know everything we know.