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Nathan the Brave, Smithfield, VA (2026)

01/23/2026

After 10.5 days at CHKD, we made it home! Nathan swiped his nasal cannula off yesterday, so the staff decided to trial Nathan on room air. Nathan did great! He was happy to have his hands back and his oxygen remained at 90-92 mostly overnight and today. He's still got a cough and needs a bit more time at home to recover, but we're happy to be back home before the wintry weather arrives. 🙂 Thanks for all the prayers! Thankful for all the great nurses, doctors, and respiratory therapists, but we hope not to be back for a looong time!

01/20/2026

PICU day 6: Nathan was trying to get us kicked out of the PICU last night 😆 Super fussy around midnight and inconsolable with the Bipap mask. They kept making adjustments, added an arm immobilizer and gave Tylenol, but Nathan wasn't having it. The RT tried a less restrictive nose mask and lowered the pressure. After a little while, Nathan grew tired and was able to sleep. He also battled the nasal cannula this morning with the high-flow oxygen. 🤦‍♀️ I told them Nathan is rarely irritable and fussy, and rarely cries. He must be really tired of all the restrictions and not having access to his hand to soothe.

The attending doctor decided to discontinue the Bipap and just do high-flow oxygen as long as labs show Nathan's blood oxygen remains normal. Nathan has been active, but calmer today. Still swipes at the nasal cannula, but is calmer when he can lay on his preferred side.

His left lung improves a little each day, the lower lobe is taking longer and is still diminished, the upper half has to open before we will see big changes with the bottom half.

Dr. Sendon doesn't think Nathan will be eligible for a Bipap machine since we are doubtful that he has sleep apnea. Nathan's never had a sleep study, but the RT says snoring is a tell tale sign, and Nathan doesn't snore. Dr. Sendon mentioned trying to get high-flow oxygen approved for home. He said he is unsure if insurance will approve, but he will try. High flow for home would definitely lower atelectasis risks.

We will be here through the week, the doctor thinks. I'm hopeful for a discharge by the weekend, but we'll see how Nathan does. 🙏

01/18/2026

I know I've been asking for a lot of prayers for Jan-Blaise and his family. Brianna's latest update is heartbreaking. JB is now on hospice due to some shunt issues that have been impossible to resolve. I have followed them for a few years and have learned so much from JB's journey, at times similar to Nathan's journey. This family has been through so much, and their faith and perseverance is inspiring. Pray for a miracle. If it's time for JB to be with Jesus, please pray for a peaceful, loving time with beautiful memories made. 🙏💔

01/18/2026

Bipap machine. Nathan doesn't enjoy it

01/18/2026

Nathan being feisty! 😆

01/18/2026

PICU days 3&4. Nathan is starting to become more alert and a little feisty, which means he is feeling better! The most alert he's been since Monday. We were upgraded to a regular room with a couch and bathroom which is nice. Nathan is getting respiratory treatments and deep suctioning every 4 hours, and x-rays every other day. He definitely does not enjoy the Bipap! Now that he is more awake his turns his head, whined and cried a little overnight. The nurses say it's a very uncomfortable sensation as they tried it themselves before.

We got Nathan upright in his stroller today. He constantly swipes at the nasal cannula when awake and knocked it completely off at one point 😆 but it's good to see him more active.

The respiratory therapist said Nathan is mostly clear in his upper left lung now, but still diminished in the lower part, due to the atelectasis. We aren't 100% sure if Dr. Sendon will do the bronchial wash, the attending doctor said it depends if we can get the mucus buildup up out in that area. I think it would be great for Nathan to go home with completely clear lungs, so I am in favor of it. Dr. Sendon will be by tomorrow again, so hopefully he will share more what his plans are going forward.

Progress is progress! I anticipate we will still be here possibly through mid-week. I wonder if a Bipap machine will be warranted or considered for home after this hospitalization. There are certain criteria that have to be met, and also a sleep study. We like to be proactive with Nathan's health, so we'll see what the medical staff thinks. Thanks for the continued prayers 💙 If any local friends are interested in visiting Nathan, please let me know. I could possibly add to the visitor's list.

01/16/2026

PICU Day 2 Update: Nathan had an x-ray early this morning. It showed some improvement, but I was hoping for more progress. Nathan has some airflow, but it still pretty diminished in his left lung. I've been comparing the metapneumovirus to the OG coronavirus Nathan was hospitalized for last Feb in the PICU. Nathan seemed to recover more quickly last time. The attending doctor compared Mpv to the flu. Looking at the x-ray and speaking with medical staff made it clear Nathan had a ways to go with the Bipap machine before high-flow oxygen is used. The deep suctioning is getting a lot of gunk out, though uncomfortable at times. Sweet Nathan cried a little earlier with the Bipap, but Tylenol seemed to help settle him. The machine is pretty intense at times. It actually rocks Nathan's body from side to side sometimes. I'm sure it's not a comfortable sensation 🥺

Dr. Cholis, a longtime PICU doc overhead me speaking to Nathan's nurse yesterday, wondering if sending Nathan straight to to the PICU on Monday would have been a better option to prevent worsening symptoms. Dr. Cholis remembered Nathan from last year and said Nathan's initial x-ray with atelectasis didn't look as emergent or concerning as it is now. He also said they try to do the least amount of interventions first, that there are advantages and disadvantages to both. He understood and said it's something to keep in mind for the future. Usually there is certain criteria to meet before going to the PICU. My thoughts are that chronic kids like Nathan with a history should be on the fast track for more interventions or quicker admissions if possible. The is the 2nd virus we're aware of besides the common cold, that affects Nathan severely. My hope is to be more proactive, whether it's to change his regimen at home or ask our pulmonologist to help advocate if needed to catch things early while in the hospital before Nathan ends up in an emergent respiratory situation again. It's hard to judge, and Nathan is unpredictable which makes decision making challenging but it's good to keep in mind for the future.

Dr. Sendon, Nathan's pulmonologist finally stopped by. I've been so anxious to talk to him to get his input on everything. We reviewed what happened and Nathan's previous symptoms. Dr. Sendon said metapneumovirus is pretty bad for chronic kids like Nathan, and worse than coronavirus for some. He is concerned about the pattern of Nathan's left lung always being the lung that is affected by atelectasis and any respiratory issues Nathan has. I had noticed that also. Dr. Sendon said he thinks he may need to do a slightly invasive procedure to "'clean" the left lung up. He thinks it's might be weakness in that lung that always causes mucus and secretions to build up. The procedure would require anesthesia and minimal surgery to put a scope in the left lung and clear it out. He said it's a common practice he does with some complex kids that need it from time to time. Dr. Sendon also said he will need to take some time to rethink Nathan's sick plan for home to see if there are more effective ways we can prevent things like this from happening. He agreed with my thoughts on trying to mitigate long hospitalizations by intervening sooner. He said he can offer his input and to call him right away when Nathan is in the ED next time.

It's all progress, just slow progress. But we will allow Nathan to tell us what his body needs. And if a longer recovery time is it, then that's what we need to do. I hope that will see some more improvements by the end of the weekend, and a happier more awake Nathan. 🙂

Thank you all for the continued prayers. We truly appreciate all of them. 💙

01/15/2026

Nathan is tolerating the Bipap machine well. The doctor decided to do Bipap first because it is more effective and works faster to open up the lungs. The plan is to use the Bipap the rest of the day and then possibly switch over to high-flow oxygen later. Deep suctioning is getting a lot of thick secretions out. We're in a curtain room, not ideal with no walls, but I'm happy that things are headed in the right direction. Dr. Mark and her nurse Deb stopped by to check on Nathan. We also received some meal vouchers from the social worker which helps with getting cafeteria meals free.

Pic of Nathan with the Bipap machine and 2 x-rays Nathan had. The white on the x-ray is the portion of the left lung that was collapsed. As you can see, only a small portion of Nathan's right lung were open.

01/15/2026

Update on Nathan: It's been a bit up and down for Nathan. He started improving a bit on Tuesday. Respirations had decreased, deep suctioning was helping, and it seemed like maybe a discharge on Wednesday was possible. Things started to to go downhill on Wednesday. Nathan slept the entire day/night except an hour in the morning. His respirations had increased again into the mid 30's-40's and we like to see it in the 20-30 range. He was still working hard to breathe and his ozygen was in the low 90's. The staff was leaving it up to us to decide, and I could tell Nathan wasn't improving enough to go home. They did another chest x-ray late afternoon which showed left lung collapse, which was worse than Monday's that showed slight atelectasis.

The rest of the report was vague, so they wanted a repeat chest x-ray this time with the full machine downstairs this morning. Slightly better than yesterday's x-ray, but still not good. Nathan also has a fever, which is rare for him because he is hypothermic most of the time. The on-call pulmonologist suggested high-flow oxygen, antibiotics, shunt series and blood cultures to check for pneumonia and rule out any other infections. Unfortunately, the PICU is the only floor that does high-flow oxygen, so we have to move downstairs. But, high flow oxygen worked well last winter when Nathan had coronavirus so I'm confident it is the best course of action to get airflow through Nathan lungs.

I did get to see my friend Lauren, who is another medical mama. They happened to be next door to us on the 7th floor! She had posted about her son and I recognized the rooms. It was nice to eat breakfast together and chat. Her son Grayson needs prayers too. He also has a virus and GI issues. It's not uncommon to run into medical moms at the hospital. We're all in the same boat this time of year, unfortunately.

Little man perked up briefly to swat at his nasal cannula and had to wear the arm immobilizers. Please continue to pray that Nathan's body will heal quickly, and rest for all of us. Please also pray for Jayce and his family. Jayce is a 2 year old little boy in our community with the same tumor as Nathan with a few differences. He had surgery for hydrocephalus recently and had a vision test which showed vision impairment.

Pictures include some from Christmas and other activities. 🙂

01/13/2026

Well, Nathan broke his long record of no hospitalizations since July. 😕 He started getting a cough a few days ago, but was coughing effectively and managing well with treatments. In true Nathan fashion, they changed quickly yesterday. Nathan's nurse Dolly had noticed his respirations were high for him, in the 30's. His normal range is 16-22 breaths. Meaning, Nathan was breathing more rapidly and working harder to breathe. We put Nathan on oxygen which helped his O2 levels, but he still struggled with his breathing. After monitoring him a bit, and consulting Edmarc, I was packed and ready to take Nathan to the ED. Just as I was ready to go, Dolly advised me to call the ambulance, as Nathan's respirations were in the 60's. She was concerned about getting to the hospital quickly with Nathan's respiratory distress. So, we called 911 and the responders who came recognized Nathan from a previous ambulance ride. Really nice, EMS staff.

They did all the tests and labs. Nathan has atelectasis, which he gets often. It means the alveoli in his lungs are not getting good airflow and essentially collapsed. Nathan also tested positive for a common virus he hasn't had before, called RP2 Human Metapneumovirus. Essentially a little worse than the common cold. Those things combined caused the breathing issues.

Nathan's labs were also more abnormal than usual, mostly showed signs of infection. We are also monitoring his liver enzymes, as they were high. Nathan's seizure medication called Epidolex can cause this, so we always monitor any upward trends.

Prior to this, Nathan's had a healthier season for him. He had GI issues in July and was in the hospital, but before that, the last time he had respiratory issues that warranted a ED trip was in April during spring break when Nathan had pneumonia. I think the additional vaccine Nathan got in the early fall helped him fight it off more effectively. We are so thankful for those healthy months.

Please keep little man in your prayers, that Nathan will recover quickly from this virus. Please also keep JB from Jan-Blaise Updates in your prayers. He's had frequent shunt malfunctions and other health issues that are requiring lots of decisions to be made. Their family has been through a lot, not only JB, but his sister also has medical conditions that require monitoring at times.

I hope to have some happier pics to post later. Nathan's not his happy, bubbly self. He's even too worn out to chew and suck his hand which is always his comfort. 😕

12/20/2025

Lots of updates to share, it's been awhile! Before I share about Nathan, there are few BT families whose warriors have been weathering a lot of challenges lately. Please follow and/or keep these kids and families in your prayers. Austin from Austin’s Army is starting a new chemo after having a break for awhile. JB from Jan-Blaise Updates is having frequent shunt revisions/complications. Jayce from 's Support Squad. I reached out to Jayce's mom recently, after learning he also lives in the IOW community. He shares the same tumor as Nathan, but with a different biological marker/condition called Neurofibratosis that caused his optic pathway glioma. Children or adults with NF1 are predisposed to developing OPG tumors. Jayce is 2 years old and recently had major brain surgery to debulk his tumor as it was growing quickly and his family had to act quickly in order to preserve his vision. OPG's are considered inoperable because of the tumor location and it's proximity to other critical structures in the brain. Jayce has a long path of recovery ahead of him and is starting chemo. I'm sure it is very overwhelming and a lot to process for his parents. A sick child and many tough decisions that had to made quickly is never easy.

Onto Nathan. Nathan's had a fairly calm couple of months. He's had several colds, but managed them like a champ! This time last year, he was not able to manage effectively without hospital intervention. I think the combination of the Volara machine, more effective coughs in general, and Nathan's increase in physical/motor strength has helped him manage better.

We had a nice Thanksgiving with our Richmond Kuders. Everyone enjoyed the new playground in the area, and Nathan was outside in 40 degree weather bundled with his electric blanket and did great! Cold weather is a gamble and risk due to Nathan's inability to regulate his body temperature.

We were saddened to lose our wonderful nurse, Maria in November. Maria has a lifting restriction due to pregnancy. We were all unprepared with a plan when it happened to make it work, but I tried with the nursing agency and school. I wasn't able to borrow a Hoyer lift until later but have it now if it's needed. Nathan weighs 43lbs and is a dead lift. We hope to keep in touch with Maria, we miss her, and truly appreciate all the love and care she's shown Nathan the past few years. We still have our other wonderful nurse, who was part-time before, who is filling in for now. We are in the interview process to find another part-time nurse since Dolly is unable to work full-time.

We were invited last weekend by a friend to attend the Hampton lighted boat parade. I was very hesitant because it was in the evening and as I shared, cold weather isn't Nathan's friend. My friend took it upon herself to call the event organizers and shared a little about Nathan and his struggles with cold temps. The event organizer was so thoughtful and offered accommodations which allowed us to attend. We were treated like VIP guests! She greeted us and let us stay in a room until the parade started and allowed us onto the dock with a heater nearby for Nathan. No one else was allowed on the dock except for the parade participants and staff, so this was a treat!

A lot of places will say they are ADA compliant, but it's the bare minimum many times. Surfacing and seating has to be accessible and many times it is not, which is a determent in even wanting to try and venture out sometimes. Or, the handicap seats are not located next to regular seats which is difficult if families want to sit together. Just some things I have learned over the years. I know true accessibility is not cost effective for many companies or organizations, but we need to try and do better as a society for our disabled population. That being said, it was a true act of kindness and thoughtfulness for Hampton to go the extra mile when so many places do not. 👏👏

Nathan did take some time to recover after his excursion. He was difficult to rouse for quite sometime. He was a little cold and his heart rate was a little low when we came home. I warmed him up with layers and monitored him overnight. He was ok and woke up by the next morning. Sometimes dysautonomia causes Nathan to "hibernate" where he goes into a deep sleep, and his heart rate gets very low. It is sometimes alarming, and after being outside, lasted longer than usual. I think short intervals for Nathan are best when outside in certain temps, but I'm glad we tried.

Nathan is enjoying school and is showing his teachers and therapists his sometimes fiesty personality. 😆 We are thankful for all their support. We also had our annual Edmarc gift delivery last weekend. Always so special and another organization with caring, supportive nurses and staff. A good organization to support if you are interested.

Nathan started getting a cough and cold on Thursday, and is not coughing effectively as he was before. Doing all the treatments and had him on oxygen overnight for the support, as his O2 was at 90-91, and we usually like to see him at 95 or above. It's possible he might be developing rhonchi, which is common for him, but can sometimes be cleared out with effective coughs and treatments. Please pray we can also manage this at home and that Nathan will be healthy for Christmas.

I hope everyone had a Merry Christmas! Thank you for all the prayers, love and support. 🎄🎁💙

Here is the link to Jayce's page also
https://www.facebook.com/share/p/1NAsG9TGrb/

Nathan the Brave

01/23/2026

01/20/2026

01/18/2026

01/18/2026

01/18/2026

01/18/2026

01/16/2026

01/15/2026

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01/13/2026

12/20/2025

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