Roman’s Story

Site created on May 29, 2019

Welcome to Roman's Caring Bridge website. Roman James Arnold was diagnosed with Neimann-Pick disease on May 24, 2019 at 8 months and 3 days old. We will be using this site to keep our family and friends updated in one place. We will also use it as an outlet for our thoughts and experiences as we navigate this journey with our little warrior. We know we have a long and tough road ahead of us but with your love, prayers and support we know that we are not alone.  We appreciate each and every one of you for following us along in this journey. We love you. 


Thank you for visiting.

Newest Update

Journal entry by Jillian Arnold

Sorry it's been so long since we've given a Roman update.  It has been a REALLY busy couple of months so finding time to sit down and write this out has been a struggle :)

Roman has had his NG tube for a couple months now.  He was doing great with it for about a week and then we had another set back😩 He started getting super congested and a slight fever so we scheduled a visit to the pediatrician.  He was diagnosed with hand foot mouth virus (which is a pretty common virus among young kids).  After a couple weeks we noticed his congestion wasn't clearing up and seemed to be getting worse.  After speaking with our pediatrician we ended up taking Roman to the emergency room, as his oxygen was dipping to levels they weren't necessarily comfortable with at night from his congestion.  He was admitted and we all spent two nights there.  They suctioned out A LOT of thick mucus from his nose.  Turns out he had bronculitus too 😐 We finally got to go home after a few very long days, and he started slowly getting better.  The congestion definitely still lingered around for a while which is frustrating because it was causing him to refuse a lot of his bottles.  The tube was actually been a bit of a blessing through this time though because we are thankfully still able to get the calories and nutrition into his body. 

We met with his GI doctor a few weeks ago and collectively decided that Roman will be officially switching over to a G-tube as opposed to the NG tube that he currently has at the end of the month.  The G-tube is a feeding tube that is surgically put in directly to the stomach through the belly.  We knew that this was something that was most likely eventually going to happen, so this wasn't really news to any of us.  We have heard that G-tubes can make things MUCH easier, as Roman wouldn't have a tube going through his nose and down his throat and taped to his face anymore. NG tubes are a temporary solution, while G-tubes are meant for more long term use.  

His surgery is tomorrow (10/29). Mom and Dad are definitely super nervous about our baby being put under for the first time, but we know that getting this Gtube will be best for him at this point in time.  Roman has been doing so great the past couple weeks since FINALLY getting over all these viruses that we are a little worried too of getting another set back with this hospital stint. We know he is a champ though and will do great. Hopefully he will pick up right where he left off in terms of his development after this surgery 😊

Roman also turned one last month which was so exciting!  We can’t believe our baby is over a year old now. He is definitely getting stronger, gaining weight, and he even said his first word last night (“mama” of course!😜) He can stand (while holding onto things) for brief periods of time, babbles a lot, and loves playing with his toys. He is still just the happiest little guy which is all so reassuring to us. 


Anyways, that’s about all I have time to write at the moment. We will keep you all updated with how’s his surgery goes tomorrow. Please keep this little boy in your thoughts and prayers for a smooth surgery and speedy recovery!❤️


xoxo,
An anxious mama 

Patients and caregivers love hearing from you; add a comment to show your support.
Help Roman Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Roman's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top