One Month Home: Life with Frankie After 15 Months in the NICU

It’s been exactly one month since we brought Frankie home from the hospital. This past month has been both beautiful and brutal. My mom has been staying at the house with me since Frankie’s arrival at home due to needing two trach vent trained adults with him at all times. We quickly learned how important that is after surviving two trach emergencies that required 911 calls the first week of being home. Each one was terrifying and a stark reminder that although Frankie is stable enough to be home, he’s still very medically fragile. 

Our living room has transformed into a mini hospital and supplies arrive at all times of day. We have two regular nurses that come Monday through Friday during the day and the nursing company is still trying to fill shifts for the weekends and nights. Both being Frankie’s caregiver when we have no nursing coverage and coordinating the rest of his care is a full-time job. We have therapists in and out, weekly visits from home health, deliveries, and multiple hospital trips for appointments. 

We are learning to live in this new normal and are grateful everyday our boys are under one roof and we only visit the hospital for appointments and don’t live there anymore. 

Frankie had his trach/vent clinic appointment yesterday and all the providers said he looks amazing and his labs look wonderful. They want to try some vent weans in August. His next big thing is an MRI in a couple of weeks to check his fontanelle again. We’re really, really hoping to avoid a shunt. Frankie is susceptible to line infections and if he gets a line infection with a shunt, the shunt will be infected too. So we hope we don’t have to go down that road at all. Other than that, we’re doing relatively normal things like getting caught up on vaccinations he missed when he was sick in the NICU.

Henry’s first tooth has finally cut through! Whew! We’re so proud of that little tooth finally making it through. He’s got more trying to cut through the gum line and sometimes we can’t tell if his fussiness comes from his gums or his ears. I took him to see an ENT but did not feel comfortable with the doctor so we have a second opinion scheduled next week to see about getting tubes. I guess I’m just too used to dealing with pediatric surgeons and pediatric anesthesiologists to be satisfied with anything else. Henry had a laryngeal spasm coming out of anesthesia the last time he had surgery (of course, it was over 6 months ago) so I’m a little paranoid. He also took steps pushing his little wagon all by himself! He’s still going to daycare once a week and brought home a cold he shared with all of us, including Frankie. Frankie handled it like a champ though and didn’t need increased oxygen or anything (other than that little mucus plug we called 911 for). 

Thank you to everyone who’s sent us supplies. I promise a thank you card is coming to you. I haven’t forgotten, and we are incredibly grateful for every item that gets sent to Frankie. I have updated the list with some things. We are excited that Frankie’s been able to broaden his wardrobe to clothing other than snap down rompers now that the picc has moved from his leg to arm!

Here’s to the first month home. We made it!

Amanda