A Day at Home, Part I

   It was suggested to me by a friend to make a post about a day in Emma’s life. I really liked the idea (thanks, Lindsey!) so I was originally planning to make two posts. The first post being a regular day at home and then another one on a day when she has doctor appointments, which will be taken at the end of the month. But yesterday (the regular day documented) had so many more pictures taken than I thought I would, but I am a details person. I narrowed it down to 53 pictures, but that was even before we got set up for her bath and trach care! So I’ll split it in to four posts total.

  This first post will be pictures that were taken using the Canon camera to show off Emma’s point of view in her bedroom, as well as some photos taken by my mom on her iPhone of me doing some “medical stuff”. First here are pictures from Emma’s point of view from her crib in the morning and at night. The first two photos are upside down on purpose ~ often when Emma is laying in the crib she will arch her back and look towards the top of her head, so what she sees in that direction would be upside down to her. Also possibly blurry before we put her glasses on, since the ophthalmologist told us she is far sighted. 

This would be Emma's POV from the trach table in the middle of her room at night before bed.

 In the previous post I talked about how Michael had spoken to Doctor Green in Michigan on the phone last week to discuss what was seen on the bronchoscopy that was done on August 27th in Orlando. The ENT who did the procedure did not give us much information, but it was done to see if Emma still has fistulas in her trachea, and yes, she still has one. Below are the pictures taken during the bronch and Michael and I actually loved getting copies. In the top photos you can see her uvula (left) and her vocal cords (right). In the middle shows the trach piece that she always has in, and in the bottom photos you can see part of the 3D split that was sewn in to keep her airway open. Since part of the splint can be seen, instead of everything being pink, that tells us there is a fistula/ rip there. Doctor Green said it is getting smaller since he last saw it in February before we flew back to Orlando.

 Since she still has the fistula we are continuing to give her the medicine called Augmentin. It is an antibiotic to help prevent any sicknesses and so far it has been working really well! She has been taking it since January when they found out about the fistulas. Even though the medicine works great, the fistula is why Michael is very stern and protective with who visits Emma. She has still not met her cousins (my brother's kids, Peyton and Helena, age 3 1/2 and 1 1/2) because they are often sick themselves due to being in daycare every other week and Michael does not want to risk anything getting passed along. With all of Emma's medical health issues, if she got sick it could affect her greatly and most likely send her back to the hospital for a long term stay (at least a few weeks probably). While I am eager for Emma to meet Peyton and Helena, I would also hate for her to get sent back to the hospital. Dr Green even told us that a sickness for Emma could be fatal. I have tried to keep all of the medical talk light and positive since she's been home, but these are the facts and I need to remember them and keep Emma's health my number one priority over "just having fun".
  Another thing we have to do every few weeks is go to CVS and pick up Emma's medicines. We really have to stay on top of these because they do not usually automatically refill or we have to call the doctors to get a new prescription and there have been enough times that the order does get processed on the doctor's end for some reason.. There are four that she has prescriptions for: Augmentin, sodium chloride bullets used to flush her trach (those are the pink things in the top left corner of the picture directly below), plus QVAR and Ipotropium Bromide medicine which are what we use to do her treatments twice a day. I'll show those in the next post.

Emma gets 2mL of Augmentin with a water flush every 12 hours via her G-tube. A flush just refers to when we push a small syringe of purified water through the tube after the medicine to help keep it clean.

 Yesterday my mom (Grandma Sue aka Grammy) came to visit for the day. She tries to visit at least once a month and we all enjoy that! She watches Peyton and Helena on days that my brother works when the girls are not in daycare, so she is also very kind and considerate of Emma's health as well. A few of her visits have been postponed due to her having a cough that she caught from the girls.

 I told my mom about the "day in the life of Emma" post and she was more than happy to take extra pictures for me. Here I am dumping water from the circuit back into the humidifier. Because of the condensation, the water droplets fall into the lowest point of the circuit, so we have to carefully move the water without it all dumping towards and Emma and going down her trach! Sometimes the water gets close to the trach so we have to disconnect the ventilator circuit from the trach for a few seconds so we can dump it onto a washcloth. That usually has to be done once per night because of how the circuit lays over the side of her crib.

 This is me filling the humidifier with more distilled water. Every couple of weeks we buy three or four gallons of distilled and purified water. It is good that we have a nice size house (4 bedrooms). Michael and I each have a hobby room- his for special make up fx and mine for scrapbooking, which also has enough square footage to become the guest bedroom with the raised queen size blow up mattress when needed. But both of these hobby rooms are now becoming storage for all of Emma's stuff- things that don't fit in this living room closet, the hallway closet, and her bedroom closet! Perhaps I could post pictures of all of that as well, but it tends to just look junky.

   For suctioning Emma's trach. This has to be done at least ten times per day to get rid of any phlegm in her trach that could block her airway and make it harder for her to breathe. For our next bullet prescription we will have to ask the doctor to up the order. Last time I estimated seven bullets used per day, but it is definitely more than that. I feel like that should be recorded over a week- that and the number of diapers used. While pregnant I had always asked how much money people spent on diapers per month so I could create our own "baby budget" but nobody ever seemed to keep track of it! We estimate 10 diapers per day, so we buy a huge Huggies box from Walmart online about once a month. At 15 months she is still wearing size 1! :)

 We push the suction catheter down to the red or blue notch (12-13 cm). Then hold down the button that creates the suction, then slowly pull it back, let go and do it again one or two more times. Then we flush it with one of those pink sodium chloride bullets so the suction tubing gets washed out. Once the suction bucket gets about halfway full we wash it out- it's just gross to look at! We always wash it out before doctor appointments too so it's not sloshing around when we put it under the stroller.

  Emma has physical therapy on Mondays. We are very fortunate to finally have a therapist who can come to our house for 30 minutes each week since it was something we had been needing for her since May (long, frustrating story trying to get that worked out). August 22nd was her first at-home appointment! We are still waiting for the Early Steps case manager to find Emma a speech therapist who can come to our house so she can learn to eat and swallow baby food. The photos with the physical therapist will be in the next post! Michael and I practice therapy with Emma a couple times each day and she has been showing improvement with trunk and head support since last month.