The Rhodes Family Adventure: A Glimpse into our Day

I thought I would share with you all a glimpse into our daily routine with Sophia. Normally our day starts pretty early, as does most days when you have young children. In the morning, before I get Sophia out of her crib, I have to disconnect her from the trach collar and unwrap the oximeter probe from her foot. I then turn off the humidity, the oxygen, and the monitors. Then we are free. I usually spend a good few minutes of the morning suctioning Sophia's airway clear. She tends to have a lot of secretions in the morning. After that, I get her a new HME to protect her trach and give her some humidity throughout the day and then put in her hearing aids. The suctioning continues throughout the entire day. I suction Sophia every 5-10 minutes a day. The suction machine goes where ever Sophia goes. It is usually always within mere feet from here and it always requires an outlet to be plugged into. The internal battery on the suction machine (if it is working properly) can last anywhere between 2-4 hours unplugged. I have gone through 4 suction machines already because they just tend to stop working, which is a big problem for us. At 7:30 am, Sophia gets her first feed of the day via her gtube. Sophia only eats Pedisure by gtube 5 times a day. She eats every 3 and half hours. We have another swallow study this month and we hope to be able to introduce foods by mouth. With her morning feed, Sophia also gets her morning medicine. She takes an antibiotic daily for her kidneys, a vitamin daily, and a medicine to help with her secretions. We have already eliminated two prior medicines from the list. It usually takes between an hour and 40 minutes to feed Sophia, each feed. We feed her slowly to help avoid aspiration. We also follow her Pedisure with 2 ounces of water daily to ensure Sophia does not become dehydrated during the day. After her morning feed, I then get Sophia ready for the day. This consists of cleaning her trach site and gtube site, removing and placing new gauze, changing her trach ties, and then getting her dressed. Then depending on the day and time, Sophia normally has therapy with First Steps for the next hour. Sophia see 5 therapists a week for an hour each session. The therapists include: PT, OT, Speech, Developmental therapy, and a parent advisor to work on sign language. In addition to her therapies, the nurses and I work with Sophia daily on her exercises and therapy activities. These include, neck stretches, balance exercises, learning games etc. I truly love having First Steps involved with Sophia. It is like having early preschool and they give us so many ideas we wouldn't have thought of alone. Sophia also really enjoys each of her therapists. By the time therapy is over, it is nap time. Followed by her next feeding and medicine. We also squeeze in lots of play and loving time. Play, Eat, Play Eat. In the evening, I give Sophia her bath. She loves bath time. Which is great, except it makes mommy nervous because she likes to splash which is unsafe because it could get into her airway. We are very careful. I still use a baby bath with very little water. I am like super hero speed in the water and out. After we get all squeaky clean. I normally change her entire trach depending on the day or otherwise I change her trach ties, place new gauze (Her gauze if changed as needed throughout the day as well), then the usual lotion, pjs, brush hair routine starts. We then start our bedtime routine. Last feed, read, cuddle with lovey bear, and rock to sleep. After Sophia is good and asleep, I take her to her crib and then very carefully connect the probe around her foot, place the trach collar around her neck, turn on the oxygen, monitor and humidity and then turn on baby monitor. Sophia usually sleeps throughout the night. However, I am still up two-three times a night answering false alarms, reconnecting the trach collar hose or generally just checking on her. Then REPEAT. Many times Sophia has at least 2-3 doctors appointments a month. I normally receive at least 1-3 calls a day regarding Sophia for either her medicine, doctors, supply orders, nursing agency etc. I do get nursing help during the work week so that I may work and do our daily tasks to keep the house afloat. The busiest part of our day is suctioning Sophia. It is a 24/7 job. A very important job. I am very grateful to have nursing assistance. I also have to continue to have someone in the car when I do travel with Sophia. Someone has to sit in the back seat with her to suction and watch her in case of an emergency with the trach should occur. Below I am going to post a few pictures of what our day looks like....