Living with wheels...

Yesterday we went for a walk to the elementary school. Emylie drove her power chair and upon arriving we needed to visit the restroom for one of the other kids. At first Emylie and I waited in the hallway because I could tell the entrance to the restroom was crowded with 2 garbage cans. Within a few minutes she wanted to go in and wash her hands. I figured we might as well give it a try. She maneuvered well getting into the bathroom and to my surprise there was not an accessible sink. We managed and made it work but looking to the future I see where my little girl is going to run into obstacles.
It is okay that the world is not made for wheels because most have legs but it still tugs at my heart.
On the way home we stopped by a good friends house...to get close to the front door Emylie had to drive on their lawn. As we were walking and I was trying to foresee how to get her to the door and realized the home had stairs approaching the front door and stairs up to the door.  My thoughts went to the majority of homes she will not be able to access.
When we took her trick-or-treating last year there were homes she couldn't even get close to the front door or be scene by the person answering the door because of stairs. What is life like for adults in wheelchairs, or even older children who are unable to be carried. I think of the day when Emylie is older and we go to family events at other family members homes. How will she participate if she cannot get into the home with her wheelchair. It is a huge blessing she has enough mobility to crawl around when she is off the vent. And for now she can be carried. For that I am incredibly grateful because I know that gives her a little more freedom.
I was so naive before Emylie was born. The more she desires her independence and uses her power chair, the more I see how many obstacles the world will present her. A couple examples:
* walking to the neighbors chicken coop... there are large irrigation pipes along the route. Legs can step over them, a barricade for wheels.
* going for a walk in the winter months... the neighbor who doesn't shovel the walk or the sidewalk outlet that is blocked by snow. Legs can walk in the snow. Wheels spin and get stuck or if the snow is too tall it is a barricade.
* a part B to the walk in the winter... you are going along the sidewalk and there is dog poop on the sidewalk. Legs can step over them. Depending on the size and placement the wheels may have to turn around and go a different route. Or if you didn't see it and roll right through it then you have to clean the wheels before going back into your house.
* there is a toy in your way... if your in a chair with wheels and cannot reach the floor you have to depend on others to clear the way for you. Legs can bend to pick it up the toy or legs can go around it.
Be grateful for your legs and all the things you are able to do without a second thought. Life is still joyful living with wheels but it can be challenging.

I wish I was better at posting...It has been awhile since my last post. So long in fact that I had to try my password a few times before successfully logging in. I think of things daily that I want to post, simply because I am not good at keeping a journal and this has been a nice way to look back.

This year started off mellow with a peak in activity in February when Emylie was hospitalized. I really hope she never gets that sick again. An incredibly frightening few weeks. We are so grateful she pulled through with her remarkable fight. She is amazing and has a strong will. The doctors said it would take her weeks to months to recover. One doctor even said it would be mid-summer before she was back to herself. Thankfully Emylie went with the few week option. Perhaps her wish to see Mickey, Minnie and Donald Duck gave her some motivation too.

In April our family had the incredible opportunity to go with Emylie on her Make A Wish trip to Disney World in Florida. I did not think we would ever be able to take a trip away from home with Emylie, let alone travel across the country. This trip meant so much to each of us. It was therapeutic, relaxing, inspiring, quality family time, laughter, memories to last a lifetime. I cannot put it into words adequately. I am so grateful for all the people who made this possible, people we don't even know to the night nurse that we couldn't have done it without.

We came home from our trip and I felt like I needed a vacation again. A dear friend saw me a couple days after returning home and said, "The one who needs a vacation the most is the man that just returned from vacation." I couldn't agree more. The laundry and unpacking seemed like a mountain...it wasn't really bad but felt like it was. Next came the end of the school year prep.  Emylie was doing home school with her teacher once a week. Emylie looked forward to the visits with her teacher, especially when she brought paints or the hammer set she loved to play with at school.  

Summer has been great and passing way too quickly. We (perhaps just me) are not ready for school to start. I love having my kids’ home. This summer, Emylie has had multiple doctor visits both at Primary Children’s and Shriners Hospital. She has recovered well from her illnesses in February and since has had some ups and downs but overall is doing well. She started us on a new adventure in June when her oxygen saturations would dip lower than normal while sleeping. That and all that comes with it we are monitoring. I struggled for about a week and a half as we waited for results from her MRI. My mind jumps to the worst case scenario and as much as I believe in the Lord’s will it still can hurt tremendously. Thankfully the results did not confirm my worst case scenario and the plan is to continue to watch and wait.  There is still worry that goes along with it but much more manageable than the previous week and a half.

A friend of mine when asked how things are going will say, “It’s always an adventure.” She too has a child with special needs. This year I have come to understand that a little more. Emylie has calm moments and then the extreme opposite (i.e. February). I guess the extreme makes us appreciate the calm on a greater level.

So far this morning things are calm…

A Tuesday In May...

I know I haven’t been good at regularly updating the blog... I hope to do better...but for today...I just wanted to share some of my thoughts this afternoon.
A  few things uplifted my soul today… watching Emylie swing outside in her toddler swing and 1)feel confident enough to let go and stretch her arms and just enjoy the ride (she said she was flying) and 2) for her to have enough core strength to let go and keep her body stable in the swing.
Another moment was watching Emylie play with her Lightening McQueen car on the floor and scoot along as she tried to push the car and tow the toy telephone behind McQueen. And then about an hour later….walk back into the kitchen and see the car and phone lying on the floor and realize how hard Emylie had to work to get them there.
It is amazing to me how much joy there is to be had. I don’t think I always see it this way with my other kids. If they leave their toy out I don’t think what their body had to go through to get it there and smile. More often than not I catch myself thinking “ahhhh, I wish they would put their toys away when they are done.” 
Emylie teaches me. She helps me see life clearer.  I am incredibly blessed to be her mom!

Trach/Vent Clinic

We took Emylie to her trach/vent clinic today. At this clinic we see the pulmonologist, ENT, trach/vent care manager and special care pediatrician. They see her one at a time and then after clinic come together and collaborate on her care and then let us know... The pulmonologist, Dr Daftary thought Emylie's lungs sounded good and discussed procedures such as a bronchoscopy that may be beneficial.

I briefly mentioned in the last post the tissue I saw while doing her trach cares. Well, I sent pictures and discussed it with Chris Hartling and she said it was granulated tissue. They usually only do something if it causes pain, bleeds or interferes with a trach change. So as I do, I worried about changing her trach with that tissue which over the last week has grown. Thankfully Emylie's trach wasn't due to be changed until today...so I figured we would do it at clinic just in case. I was telling Chris and Dr Muntz how scared I was and that I would have dreams about her trach and my sweet husband was in the corner with a smile. He said, "you know they are going to have you change her trach!" And sure enough Dr Muntz said he wanted me to be the one to change it so I wouldn't worry. As much as I didn't want to be the one to do it, I DID. So, Dr Muntz, the ENT watched as I changed Emylie's trach so he could see what the granulated tissue looks like and so I wouldn't stress about changing her trach with the granulated tissue. I am happy to say that it went very well and I couldn't tell a difference. After we got the trach changed Dr Muntz put some silver nitrate on the granulated tissue and gave us a prescription for some cream to apply twice a day. Once the dr left the room Emylie said to me, "You did it all by yourself! Good job Mommy!" Isn't she so sweet! Dr Muntz also discussed getting rid of the binky and scheduling a swallow study. With the pediatrician we discussed some medical equipment such as a medical bed and a chair and she will get things started on both of those.

Overall I think they felt she was doing well especially considering where she was last month. They didn't order a chest xray because it takes 6-8 weeks for an xray to show the change after such an illness. 2 hours later we were on our way home and pleased with the overall appointment.

This last week Emylie has done WELL! She took herself off the vent for the first time and within minutes was crawling towards me in the laundry room. It was AWESOME to see her off the vent AND crawling with a big smile. She has gotten off the vent a couple other times, once she needed extra oxygen but the other times she has done fine without it. We also saw the plastic surgeon regarding the wound on her hand. He felt it was healing well and would probably take another month to continue healing.

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Tuesday March 6th

Emylie has been home over a week and has done really well. We kept her on 1 liter of oxygen the entire first week. She only needed 1 1/2 liters one night for a few hours. Other than that she did great. On Friday the 2nd I turned her oxygen down to 3/4 liter and then Saturday a 1/2 liter and Monday a 1/4 liter. The last three nights she needed up to a 1 liter but last night was able to stay on 1/4 liter while sleeping too. I tried to turn her oxygen off this morning but within a couple hours turned it back up to 1/16 liter which is very little and not concerning to me. For how sick she has been I think she has done wonderfully. Her lungs are sounding better each day and I would say are pretty close to baseline. This morning her right lower lobe sounds a little diminished over the left. I just finished her trach cares and am a little concerned about something I saw. Not sure if it is scare tissue or granulated tissue but trying not to freak out about it. I know Steve the respiratory therapist at Primary's mentioned something and I saw what he saw then but this is larger and different.
She has been off the Morphine and Adavan for a week. (oh, by the way, I am sorry I misspelled weak in my previous postings....I tried to catch myself each time but apparently missed---) Anyway. :) On Thursday last week she was incredibly silly! Her voice was loud and clear, she would make silly facial expressions and kept us laughing all day. We think she was probably "coming off" the medications. She has been happy....can I just say she is amazing...she can be happy through the stormiest of storms.
The wound on her right hand I think causes her the most discomfort. She doesn't like it to be touched and will cry through any cares we have to do for it and also randomly tells me it hurts her.
Her strength improves each day. She can pull herself up to the side of her bed now and even crawled a couple feet today. She hasn't been off of the vent yet but I feel she will get there soon.
I am very happy to report E2 only got better after the visit to the doctor last week. We kept her and Emylie away from each other for about 2 days and were so so happy nothing seemed to progress.
It seems we are all still trying to get back on schedule. Sleep still seems to be in short supply... one of these days I am sure we will feel "caught up". We are incredibly grateful to be home and have Emylie doing so well and E2 better too. Life is good! :)
I feel blessed to have such wonderful friends and family who give us support. Our good friend Carla came by today to talk Disney with us. Her handsome son went in August on his Wish Trip and she came to share tips. She was so sweet and brought a darling Minnie bag, binder with divers and notebook! I love to be organized and I felt so lucky to have a friend who cared so much! Thank you Carla!!
To all of our friends and family - THANK YOU for your support and love and prayers!

Home

Having Emylie home has been wonderful. I think we all are getting better sleep. Seeing Emylie move around in her own environment has emphasized just how weak her little body is. The first couple days she was not able to pull herself up to the side of her crib...she is making progress with that yesterday. She also needed support to sit in her bed or on the floor and is not needing as much support as the first two days. On Sunday she was sitting in her little chair and leaned towards her right side and was unable to get herself back up. She reached out for Dave's hand for help. She is almost completely done with the weaning of medications. She continues to use more oxygen, but for the most part they have told us not to even try and get her on less for at least one week. Considering what her little body has been through in the last few weeks I would say she is doing well. She has enough energy to play with some toys and then will lie back and rest for alittle bit. She is cheery and still emotional. She sleeps well at times and then fights it at others. She is strong!

We took her to the pediatrician this morning for a follow up. She said her lungs sounded good considering how sick she got and that she thought she looked good too. Emylie was even smiling while we were there. The dr also said that by mid-summer Emylie should be back to baseline!!! Holy cow I have to admit that sounds like forever. It really isn't. And each day we make progress with Emylie's recovery is a good day...I will take it. Having worried that she might not make it, I am SO GRATEFUL she is alive and home and improving.

Our 2nd oldest, E2, has been sick since the weekend after Emylie went into the hospital. I asked the pediatrician if she thinks the cough and stuffy nose could still be the same virus or what. She wonders if E2 has RSV. OK, now my initial thoughts were YOU HAVE GOT TO BE KIDDING ME! She didn't test her because she said in the next 24 hours if she has it she will get more snot in her nose and the test works better if you can get a lot of goo on the sample stick. She asked if we had somewhere we could take E2 for the next day and see how it progresses. Then we could test her if needed and if she tests positive send her somewhere away from Emylie for another 4 days. I don't know how you send your sick child to another families home and say thanks for taking her and I hope all your small children don't get sick. If Emylie were to get something else right now it is almost guaranteed she would end up back in the hospital. She CANNOT get sick. I was a little panicked at first. Prayer....faith...pray so more.... that has helped calm my nerves. For now E2 is guaranteed and I have tried to wipe down any surface she has touched today. I am going to do my very best and pray, pray, pray and hope the Lord will watch over and protect all my children. I know miracles happen, the Lord answers prayers and I just have to do my part.

If I could ask again, please pray for Emylie and E2. Thank you from the bottom of my heart.

PICU - day 18/home - Friday

When I got back into Emylie's room this morning a little after 8:00 am she was awake and happy to see me. The nurse was across the hall helping with a new admit. She quickly ran over and said the doctors had already done rounds and the plan was to send her home on a weening schedule. She then went back across the hall. I was so ready to get Emylie out of there!! The quality of care seemed to get worse with each passing day and I couldn't stand it. Also, I was just ready to get her and I home. About 8:30am they did one last chest x-ray. After that, I started taking the pictures off the wall and the window clings off the glass door. Emylie helped put the clings back on the correct spot they came from. I packed up her get well gifts. Cleaned up the bedding and packed anything else that was to go home with her. The NP, Cory ordered a copy of all Emylie's xrays for me, so I went and picked that up and the prescriptions. At about 6:00am they had decreased her oxygen from 1.5 liters to 1 liter and she was doing well on that. At 12:45pm Dave showed up with Emylie's home vent, stroller and all her supplies to get her home. We shook Cory's hand, thanked him for all his help and we were on our way out the door. The nurse and respiratory therapist came with us to help get Emylie in the car. The back of the durango was full and we still had to get the stroller in. Dave is an excellent packer/rearranger (not really sure that is even a word) and got it all to fit. Emylie was emotional. I wasn't sure if she was thrilled to leave or if it was because her balloons were moving around or something else. When she starts to cry her saturations drop and she has an increase amount of secretions. Being in the car with her is an anxiety producer for me....I worry about her safety and being able to take care of her. Having her in the car and still being so sick makes me worry even more. Thankfully she settled down and a few minutes into the drive she fell asleep. We got home around 2:30pm to see two darling signs in the yard, welcoming Emylie home. We had to wake her up to bring her in the house....carrying her into the house was so emotional for me. I was incredibly grateful to our Heavenly Father for the blessing of Emylie's returning health and to bring her back home. We got her situated...she was excited to have Grandma H hold her for a little bit. Dayna came in the evening which was so nice to have the extra hands to help with Em. I created a schedule for the medications she is on, changed the spare trachs to the 4.0 size, washed the trachs from the hospital, tried to unpack everything, showed Emylie some of the gifts she received while she was "sleeping", washed all the stuffed animals and anything else that was potentially contaminated, changed the suction canisters and tubes on each machine, cleaned syringes, made milk, helped Dayna change Emylie's trach ties, talk to the nursing company, talk to the supply company, give my other girls great big hugs, investigate the suction depth issue that was discovered in the hospital. It makes me sick to my stomach and angry when I saw the difference myself.

This is about what the suction catheter should look like when properly suctioned. This is how far the suction catheter was being inserted for an entire week. She was paralyzed and had no way of saying - - that is too far.

Dayna gave Emylie a bath and boy oh boy did she smell better...no more hospital smell. Emylie relaxed for a little bit and then would play a little and then would lay back down and gave into sleep between 8:30 and 9:00pm.

It took us a good hour to go over details and changes with the night nurse and then we were off to bed.

It feels SOOOOOOO good to have her home!!!!!!!