Trach Care

   After my mom left on Monday (see previous posts) and Emma spent an hour making kissy noises, she napped for two hours until about 8:45pm when Michael and I moved her back into her bedroom to get her treatments done. She woke up at when Michael picked her out of the swing and one (of many) things I love about her is that she does not usually get crabby when she is woken up, she just accepts the fact that the nap or sleep is over. This night was one of those great "okay I'm awake" nights.

   The oxygen meter and pulse ox monitor, showing her blood oxygen level (100) aka her "happiness level" and heart rate while sleeping (87). She was not requiring any oxygen at the time of this photo, hence the tiny black ball next to the zero on the clear 0-10 meter. The 10 equals one liter of oxygen given per minute (LPM). Emma does not often require the use of oxygen and what the ventilator provides is enough for her.
   Below is showing getting her 16 teeth brushed after her treatments, the same two lung/breathing treatments given each morning, which was talked about in this "Day at Home, Part II" post. Since the end of June Emma has been very good about opening her mouth and letting us brush her teeth without pushing the tooth brush away like she did the first month and a half at home. Last month I even got a video of her lightly brushing her own teeth, grasping the tooth brush and using back and forth motions! We are so proud of everything she has been learning!!

  Emma needs her mouth suctioned out throughout the day as well. This is usually only needed after she has a lot of gas or poops, since for some reason pooping always makes her gag. This is a constant for her- she was gagging while pooping since she was a month old, maybe even since the very beginning as they did perform a Nissen when she first got her G-tube in September of last year. A Nissen fundoplication is a surgery to treat gastroesophageal reflux and we wanted her to get that since we though maybe that was also another genetic issue, passed down from Michael and his mom who both live with the affects of strong acid reflux. We aren't really sure why Emma gags while pooping though. The only reason I can think of is because she will raise her butt and shoulders (like doing a crunch exercise) when she poops, so then her intestines push on her stomach which pushes up and activates the gag reflex? Her mouth gets filled with saliva and sometimes formula (or gastric acid in the past) fills up the back of her mouth too and we have to suction it quickly because she does not know how to swallow yet.. I just left another voicemail for the therapy case manager to see if she has found a speech therapist for Emma yet- they deal with swallowing too.
   Because of her diaper rash, which thankfully is almost all gone now, Michael has been mixing Epsom salt in with her bath water and I think she really likes it because she usually cries when she is first being sat in the water, but she has not cried about it since he started using the Epsom salt! Because of Emma's G-tube we do not put too much water in the tub. The water level needs to stay around her waist to make sure no water gets into the hole where the G-tube is sewn in.

After her weekly botox injection, haha.. Just kidding!!!

 All dried off and getting her hair brushed. Michael always does that part while I dump out the bath water into the kitchen sink and hang up her towel. It's a special bonding time for them.

This girl has a million different facial expressions that are so fun to watch!

 We almost always turn her oxygen up to one liter during trach care. She usually needs it.

 We do trach care every night, cleaning around the tracheostomy site/hole and her neck with soap and water, then changing the ties (the blue starred fabric pieces that hold the trach in place) to dry ones, but once a week we do a trach change, taking one trach out and putting a new/clean one in. We did a trach change on Monday night for these photos. In the photo above Michael is putting a small amount of lubricant on the end of the new trach so it slips into her airway more easily. Trach care always requires two people. I hold Emma up with my right hand and hold her trach in with my left hand while Michael does the cleaning and the ties are off.

 These trach care photos were taken using a timer. ^^ Michael then cleans her stomach incisions and around the G-tube with another soap and water gauze. Usually I help by holding Emma's arms and legs out of the way, but he was able to manage this time while I took the photos for documentation. For the first ten days after coming home from the hospital after her most recent stomach surgery, they gave us a prescribed ointment to put on the incisions. We have been putting a onezie on her each night because she likes to scratch her stomach and pull on the G-tube if we leave her with only a diaper on. At 15 months old she fits into 3-6 month clothes, but 6-9 month stuff fits over her head better, so she might be moving up in sizes soon. Her last known weight was 13.5 pounds, but according to the home scale test I just did (the difference between my weight then my weight while holding her) it says she is 15.4 pounds! So I'll ask them to weigh her at her doctor appointment next week to see if that's correct.

Goodnight kisses!

   At night Michael puts on Emma's leg splints- sometimes she keeps them on for a while and other times they have been kicked off within five minutes (depending on how quickly she falls asleep). We turn off the lights, turn on her water projector that displays moving colors on the ceiling and her forest music box with moving animals that plays for a few minutes before automatically turn off. We fill up her feeding bag for the night and refill the humidifier with distilled water. Every 10 days we change the ventilator circuit to a fresh one, as well as install a new humidifier. Sasha will usually come in Emma's room at night and sleep under the chair for a while before later moving to the living room couch.