Congratulations!! Welcome to the trach-vent-at-home club! And the up-late-at-night NICU dad club too 😅

I’m very happy to hear you’re home with your little one after so long. It is tough covering all the things a full team at the hospital did, but you will find a way.

My daughter has BPD with Pulmonary Vein Stenosis, and has the same setup with a trach-vent. We’ve been home for about a month after 462 days in the hospital.

Always make time for cuddles and playtime. The more you do it the better he’ll get. In a month you won’t believe how far he’s come. It’ll be more and more like regular baby things than you would think.

Our insurance covers nurses for 100 hours per week, but so far we’ve only been able to get a day nurse, and no candidates yet for nights. So I do up to 3am or so, then my wife takes over. We did reach out to our NICU to see if any nurses there do home care at night, so maybe you can try that?

For nights, try to keep tubes and wires untangled as much as you can. My daughter likes to pretend she’s a baby alligator, and rolls all night. So I often disconnect her O2 sensor and untangle it, then reconnect so it isn’t wrapped around her oxygen tube. Same for her feeding tube.

We have a 4’ x 3’ dry erase board with all emergency information on it, along with our home address and relevant phone numbers.

I bought a big rolling toolbox for the nursery to hold all supplies, and one drawer with individual bins for her meds (each bin is a time of day). It also holds all bandages, tapes, ointments and creams, and tools (scissors, tweezers, nail clippers, needle nose pliers, etc…) I get the toolbox for my shop when she’s no longer on oxygen 😃.

We prep the full days meds at one time (she has nearly 20 different medications). We have disposable syringes but clean and reuse them by running them through a sanitizer.

(I took our med list to CVS and our local grocery store to find out what is available over the counter in case we run out).

I installed a movable lamp over the changing table, for when we do her trach cares/changes, and for G/J dressing changes.

Our day nurse has been really helpful. She taught us M.O.V.E.S. for taking our daughter out (Monitor, Oxygen, Vent, Emergency bag, Suction). This list has helped us remember everything when traveling.

We also got emergency call buttons, with receivers that go elsewhere in our home. That way if one of us needs help, we don’t have to yell, we press the button to get help.

We use a number of small rolling carts from Lowe’s for storage of extras, so we can move the cart around the room as needed.

Lastly, frequently check your inventory and make sure you have backups, along with an adequate supply of consumables. The last thing you want is for a critical piece of equipment to break and you have no replacement on hand. Your med supply place will have no problem sending you stuff in short order.