Life has changed in quite a few ways since Grace got her tracheostomy after becoming ventilator dependent while in the ICU for severe pneumonia. We are adjusting and getting used to her new needs. Being older parents and set in our ways, change is not easy, but with Christ anything is possible. I thought I’d share a little about our daily routine and some photos of her room remodel.

When she first got home we were winging it every day but now we have a routine. Our morning usually starts with extra suctioning due to accumulated overnight secretions and a breathing treatment. Then I get her feeding and meds ready while I make coffee. After her feeding , diaper change, meds, and repositioning, I do trache care . That includes cleaning the area, replacing the inner cannula and replacing the gauze. She requires additional breathing treatments and frequent suctioning all day. She takes three seizure meds and also a muscle relaxer for contractures.

All day I make sure her trache doesn’t come out, something we’re definitely sensitive to after what happened to her in the hospital . I clip the circuit (ventilator hose) to her shirt and to a pillow to keep it in place so it doesn’t pull on the trach .

We had to start tying a lace around where the trach connects to the circuit lately because for some reason the circuit popped off several times. Thankfully the ventilator alarms when that happens . A mom in my Facebook trach group told me about tying it on. I also change her position so she doesn’t get bedsores. She had a small bedsore on her hip in the hospital. She gets three feedings a day and she poops almost every time she gets a feeding which is a lot more than used to.

Nights can be tough. At night she often sets off the ventilator alarm because her sleep schedule is off so me and John are up and down a lot and we are sleep deprived like when we had new babies in the house.

We don’t have any help at this time. We did have a nurse here for two days last week , and I really like her, but for now that’s not a regular thing because she has another client . Hopefully she will be our nurse eventually. I can’t be more than a minute away from her in case she needs suctioning or her trache comes out so I don’t go anywhere unless John is home. She’s dependent on the ventilator for breathing.

Her room

This is basically what her room looked like before she came home. I had to go back to 2019 in my photos ! The bed was against the wall and there were tons of boxes of excess supplies stored in the room. My sister came over one day and took everything out of the room and we put the bed in the middle so both sides are accessible. Then she donated a truck load of boxes and got rid of some , too . The rest got moved into the guest room. We are going to try to limit how many supplies we store.

Before she was discharged we received a delivery of new equipment and supplies that needed organizing and storing. We are only keeping a week’s supply in the room. I bought the hanging storage bin and some tubs.

God has been so good and faithful to carry us through these changes , provide for all of our needs, and forgive us for our shortcomings! Questions about anything? Feel free to ask! For more about Grace click here