Happy 3rd Birthday!

I don't know where the time has gone but my little girl turned 3! We celebrated on Saturday and invited some of her favorite people to join in the fun.

When I asked her what she wanted to do on her Birthday she said blow out candles. So while she cannot eat cake we still made it to her liking. :) Originally she said she wanted a jungle book cake and then a Donald Duck cake and then a purple and green cake and then a Minnie cake. So I tried to do a little of everything.

So this is Mickey, Minnie, Donald and Daisy driving through the zoo. The only thing missing is the purple.

Emylie has attended other birthday parties and has enjoyed the pinatas so we got a Minnie pinata.

She loved opening the gifts and her facial expressions were priceless. She was very kind and polite and a joy to watch.

Happy Birthday sweetheart!

Feeling Better!

Emylie is doing better today. We have adjusted her diet a little to give her tummy a rest since Wednesday night. We will gradually increase her volumes back to her regular amounts but will do it slowly. We measured her stomach on Wednesday when it was distended and again on Thursday. She measured 1 3/4" less on Thursday than on Wednesday. Her poor little tummy was tight.

School Nurse Update

This afternoon we interviewed 2 nurses (nurses #4 & #5) to go to school with Emylie. We had the school district nurse come and also asked a family friend who is a nurse come to listen in and ask questions where they felt needed.

Nurse #4 - Never changed a trach and no vent experience!! At this point I wanted to cry and tell her she could leave because there was no point in continuing. I was frustrated that the company sent another nurse that had not changed a trach or worked with vents.

Nurse #5 - Has potential. She worked as a tech in the PICU at Primarys before getting her RN and has actually changed a trach AND has vent experience. She interviewed well and I feel she might be a good fit. Dave and I feel we will have her come spend some time with Emylie in the home while we are here and we can go from there. :)

What a day!!

We think Emylie has the stomach flu! I am going to give a warning that I may discuss some body fluids that might make a weak stomach turn. I will try not to give to much information though.

Tuesday during the day she had not urinated as much as normal. By evening her stomach was distended and when I tried to get any excess air out through her feeding tube I got some but her tummy was still big. A short time after she had 3-4 watery stool diapers. She fell asleep for the night. No more stool diapers for the nurse and she slept well.

First thing in the morning when I was with her she had another watery diaper but was realively small compared to the ones from yesterday. I figured it was the last of whatever and figured she would be on her way to getting better. Elizabeth got her tonsils out on Monday so I made arrangements for a nurse to come be with Emylie for the day so I could take care of Elizabeth.

The nurse arrived and Emylie's tummy didn't stop. We would finish cleaning up after one diaper change and it seemed she needed to be changed again. I had gone to the store to get Elizabeth some more pain medicine and when I got back the nurse told me Emylie had thrown up! Surprised because she has a nissen, where she is not supposed to be able to throw up and frightened at being in unfamiliar territory. She thankfully didn't aspirate on any of it and the nurse took great care of her.

By the time Emylie fell asleep for the night I think she had about 20 diapers. She was exhausted!!! I am so grateful to have had help today with Emylie. I am so tired from all the day had to offer and glad I had help.

Pre-School

The plan for Emylie to start pre-school today has been in the works for months. The talks and preparation began back in the early Spring. I knew Emylie would need a nurse to be with her and had asked the nursing company we currently use to start sending nurses so we could all get familiar with each other. A few months later I learned that the school district contracted with a different agency to provide the nurses for school.

I tried to be proactive and tell the district that I would like to meet the nurses a couple months in advance and also like to have them do a few shifts at home with Emylie so Emylie, Dave and I were comfortable with them and so the nurse was comfortable with Emylie. They kept telling me they would make sure things would work out and they would make sure we met the nurse in advance.


I got a call the 1st of July from the special needs nurse with the school district. She left a message notifying me that the new nursing company would be contacting us by the end of July to make arrangements to meet the nurse.


The nursing company called the first week of August. They had a nurse for Emylie. She wanted to read Emylie's care plan before coming, so a time was scheduled the following week to meet. A couple days later the company called to tell me nurse #1 no longer was able to do the job and they were sending nurse #2. And that I would like nurse #2 better than nurse #1. The day came, the anxiety level was high in preparation and nurse #2 never showed up. When I tried to call the company it was after hours and they didn't even have the nurses information in the computer - she was that new to the company. I called the following day and they had not heard from nurse #2 but gave her until the end of the day to call. She never called and the following day (Aug 12) the company told me they would have to put an application out for another nurse. WHAT!!! You don't have another option?


A week after nurse #1 & #2 were supposed to show I got a call from the company informing me that they found another nurse (#3). This was Tuesday before the 5K. I had all the to-do's for the 5K, Emylie's birthday, back to school prep, a family reunion among all the regular to-do's. It was important to me to find a nurse for Emylie but honestly I was frustrated that it was the week before school and they were just sending a nurse. And I didn't really have a lot of availability to do meet. I tried as best as I could to get things in place and was told it wouldn't be last minute and here we were - - last minute. We scheduled a time for Friday morning when Dave could also be there to meet her.


Friday, nurse #3 shows up. She has NEVER changed a trach and has very little vent experience. She was very nice but those 2 things are very important things to know how to do. I NEED to know they can change her trach and take care of her on the vent as well as off. When I found this out I really just wanted to cry and say thanks for coming and see her to the door. I didn't feel like there was any reason to continue. But I continued with the list of questions I had only to find out a few more things that were a little concerning.

After talking things through with Dave we felt we knew we needed a nurse who already knew trachs and vents to feel like we could feel comfortable with them taking Emylie out of the house. On Monday we tried to see what it would take to use the company we already use for nursing care. We were told that the district really wanted it to work with the contracted company and so to try another nurse.


This morning I talked to the director and she informed me if this company didn't work out they have a 2nd company they contracted with that we could try. It still isn't the company we use. I didn't ask the director the name of the company so had to call back and ask her secretary. It took her a minute to find out and when she got back on the line and said that is was M#$%^& - I said "oh that is even worse!! I have not heard one good thing about that company!" Wow! (I don't think the secretary knew what to say)

Later in the day I called the nursing company to make sure they knew we did not want to use nurse #3. She said she already had two more applicants for us to interview. We scheduled to meet them both this coming Thursday. Apparently they both have trach and vent experience...

......to be continued......

Thank You!

The 5K came together nicely yesterday. I will post pictures and more details soon. For today I want to say THANK YOU to all of you who came and to all of our volunteers. Thank you to each of you for making it a success! We couldn't have done it without you.

Trach comes out twice in 3 days...

Trach = Airway

Trach out = No airway

Emylie's trach is changed weekly. Even with those planned changes, my adrenaline increases...I get nervous, scared, anxious, emotional (but well kept together). We do it and it goes well.

When the trach comes out unexpectedly...all those feelings are magnified and major fight or flight kicks in.

Tuesday morning I was getting ready for the day. The night nurse was still with Emylie. I heard Emylie crying and knew by the sound of her cry something wasn't right. I went to the bottom of the stairs to try and listen for more information when I hear the nurse say, "hold on...we got to get it back in." I couldn't get upstairs fast enough. Thankfully by the time I got up there the nurse had Emylie's trach in and all was well other than the emotional upset Emylie and each of us were feeling.

Tonight I was reading books to Elizabeth and my niece when I heard alarms and then my parents yelling for me. I flew upstairs as fast as I could to hear Dave say, "Emylie!" The tone in his voice...I've heard before...it is how his voice sounds when he is trying to make sure she doesn't pass out. As I got around the side of her bed she was a dusky color. Dave had a new trach in his hand. He put it in. Put the vent on. Her coloring improved. He sat her up. I attached the ties and turned up the oxygen. She was better other than the tears running down her face and the emotions. I wonder what she feels and how frightening it is for her. I know what I feel and cannot imagine how she must feel when it happens.

A fever???? What do you think? What do you do? With my other kids, depending on how warm they are and how they are acting depends on the answer. Usually you watch for other symptoms and go with it.

With Emylie you kind of do the same thing but NOT.

A week ago, Emylie woke up with a fever over 100 degrees. My anxiety level immediately increases. I start with the check list in my head. How does she look - a little tired still. Listen to her lungs. It sounded like air was passing through her lungs well, but there was a little something different. And because I am an amature I don't know all the technical terms for lung sounds. I know what her clear lungs sound like and if they are different, I just don't know what to call the different. Her urine had been questionable for a few days. I had already cathed her that morning before taking her temperature so I figured a few hours later I could cath her again in a sterile cup and send it for a culture. Crazy thing...when I cathed her a few hours later her urine was clear as could be - - go figure. I called the doctor office and spoke with the nurse. Gave her the details and she said just to watch her and not worry about a urine culture. Emylie was playful through the day. Her fever got as high as 101.8, she had a rough night, increase oxygen needs, increase secretions, a clear runny nose and a sound in her lungs that sounded like someone rubbing a inflated balloon. After her restless night and the nurse confirming the sound I heard in her lungs, I decided to cath her first thing and take the urine to be tested and while I was there have the pediatrician listen to her lungs. I cathed her and of coarse it looked crystal clear again!

Due to the fact that we only have one vehicle and the doctors office is within walking distance I figured we could walk to the office. I started to get Emylie and all her equipment ready. I also was trying to get her sisters and cousin on board for the walk too. Just when I had them convinced this would be a fun walk up the big hill I realized a very important piece of the stroller was missing... the bottom tray that holds the suction machine and the vent. It was in the car with Dave at work. Hmmmmm - I could probably just carry the vent on my shoulder!?! It is heavy but a mom has to do what a mom has to do.

Dave came to the rescue though and brought me the piece to the stroller, told me he would stay with the three girls at home and I could take Emylie to the doctor in the car (taking her in the car by myself is a whole other post I will have to tell you about). It almost felt like more work to pack her up in the car but we did get there faster and with air conditioning. :)

I gave the doctor Emylie's urine and they got her back in a room. The doctor came in and said the initial test they do on urine came back negative. Great - NO UTI! She then listened to her lungs and said the sounded GREAT! This is the time when I start to think I am a paranoid mom and that the doctor must think I am crazy and over protective. I am glad the urine looked good and that her lungs sound clear. We go out the door thinking she must have a virus and cross our fingers she stays stable enough to stay out of the hospital.

Update...a couple days later I got a call from the pediatrician telling me that Emylie's urine culture was growing. We had to wait another day to find out exactly what grew and what it was resistant too. Bummer that she has a UTI, but glad to get it taken care of.