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.

.

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!!!!!!!

Packing up....

We have been packing up this morning and are getting ready to take Emylie home!!! So excited.

She has had a good morning and I think she too is excited to go home. I will update more later.

PICU - day 17...Thursday

What a day!
Emylie slept mostly through the night. At 3:45 am I heard her cough/gag and then her alarms started. I quickly got up. Her eyes were open and when I asked her if she was ok, she shrugged her shoulders. Her sats were in the 70's so I suctioned. After one time of suctioning her oxygen saturations (sats) started to increase. Just about that time the nurse came into the room. I suctioned her a 2nd time and she was better. The nurse left back to wherever. It took Emylie about 15 minutes to fall back to sleep. I was grateful she went back to sleep so quickly because I cannot go back to sleep until she is, especially with the nurse out of the room. Emylie slept until a little after 9 am. I had to leave at 7 for shift change and for the first time in a few days actually ate breakfast. If you are ever at Primarys on a Tuesday or Thursday morning they serve delicious blueberry pancakes with yummy buttermilk syrup.
The doctors rounded at about 9:30 am. They mentioned that Emylie's breaths per minute setting on her vent was changed from 20 to 15 yesterday at 4pm and she did well with it. (I didn't even know they did that....not sure where I was...) They decided to stop the morphine and cut back on the adavan going from every 6 hours to every 8. There was questions about going home and what physical therapy she would need, medications, etc.
The wound care nurse came in and looked at Emylie's pressure sore on her right hand. I took a picture of it so I will have a baseline picture of it when we get home. The nurse gave me instructions on what to do. Later in the afternoon I was told a plastic surgeon was coming to take a look at it because the wound care nurse didn't feel like it was getting better. The surgeon stopped by, took some pictures and sent them to his boss. Made a phone call and they want to see her in clinic in 1-2 weeks.
Physical therapy also came by in the morning and brought a wheel chair for Emylie to use while she is here. She is unable to leave her room because of the virus she has so the chair was mostly for her to practice sitting again. The therapist made a few suggestions of what to do at home....everything we were working on before and then having her sit in a wheelchair three times a day. Emylie loved sitting in the wheelchair and she looked good in it too. Sarah, her school nurse stopped by a few minutes after Emylie got in the chair. She was so excited to see Sarah. Sarah played with Emylie...colored, played with stickers, candyland, etc. I stepped out to get some lunch at the PICU parent hour and met a nice couple whose 7 month old daughter had heart surgery yesterday. After getting back from lunch the time flew by. I spoke with the quality care manager about some of our concerns with the level of nursing care Emylie has been (or hasn't been) receiving. They were very kind about it and said some of the things we brought up were problems they were aware of. I got done with that and noticed Emylie's heart rate was higher than normal. I took her temp and it was 37.7 and 38.0C. The nurse said it was likely it was because she was "exercising" in her wheelchair. Chris Hartling came and discussed some additional things with me. She so perfectly described why Emylie's lungs sound the way they do and that it doesn't necessarily mean she needs suction. When Emylie breaths you can hear and feel each breath. The airways are inflamed and therefore smaller. Because they are smaller the air passing through will sound different and her breath sounds coarse. Before she got sick if you could feel and hear it we would suction her...but this is not always the case now. So it was nice to hear Chris's explanation.
As I was getting her back in the bed after being in the chair I noticed her scare from her myelomeingocele closure was a darker red than normal and she had little spots on her back. I asked the Nurse Practitioner...she said the red spot looked like the beginning of a pressure sore and she would have wound care come and take a look at it. ARE YOU KIDDING ME??????? I wasn't sure what to think and had a flood of emotions hit me. That was the last thing she needed was a pressure sore on her back. SERIOUSLY!!!! Sarah was still hanging out so she got to hear my vent and cry moment. When the wound care nurse came back she had a dumb explanation for what she saw. After she left and Sarah, Dave and I were discussing it, it was decided that the wound care nurse did not know what she was talking about....the Nurse Practitioner confirmed. The NP did believe we caught it before getting worse but that she did have the beginnings of a pressure sore.
Throughout the day Emylie has progressively had more and more loose poopy diapers. She also tried to connect the blood pressure cuff house and was very jittery and couldn't get them together as a result. Dave talked with the NP who said she believed it was withdraws to the morphine...her last dose was a 8am and it was about 10p when she figured it out. So they gave Emy a 1mg dose of Morphine to help with the withdraws. I think the plan is to have her weaned from all before coming home.
Emylie fell asleep during trach cares around 6pm and then woke up about 8:30. It is now 7 minutes after midnight and she is going strong. I so want to sleep but cannot seem to let myself until she is asleep. I hope she decides to allow herself to rest very soon.
She was happy today. I think I am forgetting some details.... We are planning to leave tomorrow....it will be a road of recovery at home still....she will likely be back on the vent 24/7 for sometime and I keep falling asleep typing. I am going to go now and see if I can't convince her to close her eyes......

PICU - day 16 Wednesday

All the days are running together. I have to really think which day of the week it is. As I typed the title I put Thursday instead of Wednesday. I feel like my brain is turning into mush. Last night as I was lying down to go to sleep a code blue was called in the cardiac ICU. I have met a sweet mother who's daughter is in the CICU and my heart sank thinking it could be her daughter. And really just thinking it was any child made my heart hurt. A code blue is something you never wish to have happen to your child or anyone's child. I experienced two of them when Emylie was 4 and 6 weeks old and I think I still have post traumatic stress from them. Each time the nurse and respiratory therapist do her trach cares or change her trach ties I get a pit in my stomach. When they move her in her bed I have fear of something happening to her trach. The fear is always present. There was one nurse who even told me, "just let us do our job!" I am sure I can be annoying but oh well, I have to make sure they are taking care of my girl.
Today, WEDNESDAY....was a good day for Emylie. She looked more like herself today than any day here so far. She was playful and silly. She laughed with her hand over her mouth. She cried but not much. She wasn't as moody. She was more interactive with the nurses. She smiled. She made me laugh and smile.
There is a new attending doctor on shift this week...Michelle Schober. The nurse practitioner this morning was Tisha. I talked to Tisha before rounds. I told her that as excited as we are to get Emylie home I want to make sure she is ready so we don't have to come back. She felt like another day of watching her would be beneficial too. When the "rounded" and the doctor saw how much morphine and adavan Emylie is still on she thought she needed to stay until Friday to get the amounts weened down. Also because of her work of breathing and desats into the 60's and 70's when crying they concluded to not send her home today. So they weened the morphine from 3 to 2 (not sure the measurement right now) and then tomorrow the adavan will be weened. They usually only do one at a time. I had asked the nurse if we could try turning the oxygen down to 1.5 Liters instead of 2 because Emylie's oxygen saturations were 97-98%. The respiratory therapist came in and made the change, her sats dropped to 94%. She has done well throughout the day on the 1.5 liters. We did some crafts this morning and she played with stickers and played bingo. She took another 4 hour nap...which is great because she woke at 5:30am when they did her trach cares and did not go back to sleep. That is too early for a little girl and her mommy. ;) During her nap she desatted a couple times to the 80's and 70's but with suction she came right back up. She sounds really coarse but does not have a lot of secretions. After waking from her nap the nurse, Laura and I gave Emylie a bath and changed her linens. I got to sit behind her in her bed and do her hair. I also got to hold her earlier as well. I would like to think that she feels better after having her bath because I feel better for her. I think it was about 6pm, my brother Garry stopped by. He was around for a conference and came by for a visit. It was fun to visit with him. Emylie was playful and laughed at him as he talked for the horse. At shift change Garry and I went to the cafeteria for dinner. I don't get to see him very often and enjoyed visiting with him! Thanks Garry! When I got back up to Emylie's room the nurse was just finishing changing Emylie's diaper, which had leaked all over one of the pillows that was used for propping Emylie's legs. Ok, sorry I probably could have left that out.....As she was moving Emylie she realized that it had gone all the way through the linens. So I got to pick Emy up and cuddle while the nurse changed the linens. We got her all comfy in her bed. I am a little worried about her scoliosis progressing. She is so weak and will lean/fall towards her right side most of the time. Dave noticed tonight that she kept tilting her head to the left. I am going to have to watch what she does tomorrow with that. We then colored, played with magnetic dolls, filed her nails a little, skyped with her Daddy and sisters, played her tablet, watched Mickey Mouse and now she is trying to fall asleep.
If I knew how to get pictures off my phone, I would show you the big cheesy grin she did earlier today - - it was more her!! As scary as it is to think she may take weeks to months to recover completely it was really good to see her smile and personality today. I felt like we are going to be okay.
Okay, she is asking to brush her teeth now. She is so more awake than me. Oh, and I forgot to mention, she suctioned her own nose and mouth a little this evening. It was very impressive!
Good night!

PICU - day 15 2nd half of the day...

It is about 5:30pm on Tuesday. At about 12:45 pm I was lying next to Emylie in her bed. The respiratory therapist came in and said he was ready to change her trach. So, the respiratory therapist, the nurse, Dr. Bennett and I changed Emylie's trach. Thankfully all went well. Emylie did wonderful. Amazing as always. I wondered if she would have fear from the last time we changed her trach when it didn't go so well. It was quit a difference to hear Emylie's air leak. It will occasionally sound like the sound you make when you blow air on a little kids tummy. They say that because of the increased pressure right now she may have that sound until she gets better. At first I was so concerned, but as most times talking it through with the right people helps. After we had her all situated after the trach change, we told her that Kids Crew had brought her a Mickey Mouse coloring book. The first thing she said was "where". Her voice is weak but what a beautiful, sweet sound!
A short time after changing her trach, Dr. Bennett came back in her room and said that because she has done so well it might be possible for her to go home tomorrow. As exciting as that sounded, I have to admit my chest filled with anxiety. Just yesterday we had talked about maybe Friday. He said of coarse it would depend on how well she does when they switch her to the LTV vent. A few minutes after that the discharge planner stopped by. Okay....now they are really moving quickly. She asked if we had nursing and I had told her that just yesterday I told them we didn't need nurses through Thursday. She went through the equipment needs and a few other things and said we would talk more in the morning.
We had a visit from Chris Hartling and discussed a few things. Deb (the NP) also stopped by. They are such wonderful people and are so good to talk things through with me. The anxiety levels decreased a little with our discussion. It is still going to take Emylie a while to recover once she gets home. Her lungs will take time to heal from being so sick. Deb was impressed with how quick she is getting better. It was also pointed out how quickly she got worse. They want to make sure they don't send her home to soon which is nice because we all know we do not want to be coming back any time soon. Chris mentioned that she may benefit from a trach/vent clinic appointment in March.
The Nurse Practitioner, Tisha stopped by around 2 and said she isn't sure Emylie will go home tomorrow. And then the charge nurse said she thought Friday would be a good day for her to go home. So at this point we will just wait and see.
At 4:40p Emylie was sleeping comfortably...the respiratory therapist came in and switched her to the LTV vent. She slept through the change. Her oxygen saturations went from 94% to 84% within a few seconds. The RT turned up the oxygen and within a few minutes was able to turn it down from 4 to 2 liters. Other than the initial drop she has done just fine with it and she is still sleeping.
In between the trach change and her falling asleep I got to hold her again in her bed. We played Lego's, colored and watched Mickey Mouse. They physical therapist stopped by and said they will do what they can while she is here to get her strength back to baseline.
I have not had a meal today and am trying to make sure I drink something. I didn't dare leave this morning and then when I thought about going to lunch is when Emylie asked me to hold her and how could I pass up that opportunity. This evening I picked up an antibiotic for my sinus infection, so hopefully I can get on the mend before to long too. I need to make sure I am on my game for when Em gets to come home. My friends son was admitted this afternoon to the 3rd floor and then my cousins twin stepsons were both admitted today, one to the PICU and the other on the floor. I pray they are able to get well quickly and back home soon too.
Overall, Emylie has had a nice day. She is getting stronger each day. She hasn't lost her fight! We are one step closer to home! Yay!!

PICU - day 15

Ok... I got the venting out and I think things are going to be better. Dr Bennett and the nurse practitioner, Tisha came about 9:45 am for rounds. Tisha was the only one in the room for a minute and I asked if we could get a different nurse. Of coarse I immediately began to cry. She was very kind and said she will look into it for me. The two nurses, pharmacist and respiratory therapist joined the dr and np.
Dr Bennett sounded so upbeat about Emylie's progress. The plan for today is to talk to Chris Hartling about changing her trach back to an uncuffed trach. She will have the 4.0 trach instead of the 3.5 she came in with. This isn't a bad thing...it just means she has grown and should be ok with a larger one. They will see how she does with the trach change and then look at putting her on the LTV vent (this is like the one we use at home). They will also wean her morphine a little more. It will be nice when she is off of that....I think it makes her moody.
Rounds were short today which I think is a very good sign that she is doing better each day.
The charge nurse, Tracy stopped in a few minutes ago to see if things were better with the nurses. She said she talked to them and told Nancy (who is helping Stephanie) that Emylie has been very sick and we don't want her going backwards. She told Nancy that if Stephanie is helping the other patient then she needs to be in with Emylie. Tracy is great. I am grateful she was understanding to the need.
Emylie slept from about 9-11 this morning. She is now playing with the horse. I am thinking we are going to have to get her a horse to play with when she comes home. She loves the brown one and wants to keep it close by.
Chris Hartling also stopped by. She said Emylie should be good with the trach change to an uncuffed trach. She wants to get her home and is excited to see her progress. :) I was hoping to have Chris do the trach change but she said she has been sick so doesn't want to get to close.
With the trach change....Emylie's voice will be back!! I am SO EXCITED!

PICU - day 14 Monday cont....

So Emylie's afternoon nap was about 4 1/2 hours long...she was tired! The nurse changed her diaper and that didn't wake her up. It wasn't until they turned the light on to do her trach cares that she opened her eyes reluctantly.
While Emylie was sleeping a darling friend stopped by for a few minutes. She brought a a darling Mickey Mouse book for Em and a giant coloring pad for her sisters and some snacks for mom and dad. :)
They weened her PEEP down to 6 - that is her home setting right there!!
Just before Emylie woke from her nap, Dayna stopped by. So when all Emylie's cares were done we painted her finger and toenails. A little before 7, we skyped with our family at home. Emylie LOVED seeing her sisters. She quickly tried to show them her painted fingernails. It was nice to be able to let her sisters see her too. They all miss each other. Emylie was very disappointed when the skype call was over. She leaned over on the tray in front of her with a disappointed expression. She and I colored some more and played with the horse. We watched a little Mickey Mouse and Little Einsteins (she even patted her legs when the Little Einsteins asked her to help). About 8:3o pm I could tell she was getting sleepy again. I told her she could play for a few more minutes and then it would be time for bed. As much as she tried not to fall asleep, about 9:30 she gave in and was out for the night.

A little venting..... PICU - day 15

I am so irritated right now. I got back to Emylie's room a few minutes after 8 am. The nurse, Stephanie was charting...she was orienting with another nurse last week and now she is transitioning with nurse Nancy and they are caring for Emylie and the boy next door. I hadn't had breakfast yet and asked Emylie if it was ok if I left to go get something to eat. She said no. The nurse then said...I have to go next door really quick and then I will be back if you need to run upstairs. That sounded fine because I wasn't going to leave Emylie unless she was ok with it. I am pretty sure I have a sinus infection and wanted to see if I could be scene from the ENT's here. I went to call and they weren't open until 8:30am - it was only 8:11a.


Emylie and I colored. She played with her tablet for a few minutes and was getting so so sleepy. Her eyes would close and then she would open them and try to play. The wound care nurse came in and checked Emylie's right hand. It doesn't look good to me but the nurse said it is healing. She put some medical grade honey on the scab and then a bandage with silver in it around the scab and then covered it with clear tape. They will follow up in a couple days. Emylie was falling asleep while the wound care nurse was doing her thing. The two nurses came in for a quick second...they asked what the wound care nurse was doing. They barely heard the first part of what she said before they had to run next door. By this time is was a little after 9:ooam. I called the ENT's again and the earliest appointment they have is next Tuesday. Seriously!! That isn't going to work.


About 9:15am Emylie's feeding pump alarmed....it alarmed for 30 minutes before Nancy came and added more milk. I tried to find a nurse in the hall to see if someone else could help because I couldn't see either Stephanie or Nancy. I was so bothered! There was also a couple times Emylie's oxygen saturations dropped, I suctioned her a few times but the nurses did not respond to the alarms. I am so bugged and I am sorry you have to hear about it. I hate the feeling that I cannot walk out of her room for fear that those who's hands my daughters life is in will not respond. I think they are getting complacent.


I know that I can suction Emylie and I don't mind it....but I have to admit....sometimes I just want to be Mommy and cuddle and love her and let the nurse handle the medical stuff.

What is it like in the Pediatric ICU?

You have to have the clerks open the door for you to get into the PICU.

Emylie's current room has windows that if you stand on your tippy-toes you can see the Salt Lake Valley.

There is a slushy machine and an ice machine that makes the perfect ice...you know the kind you might drive to a specific gas station for

there are medical staff at every turn

parents some with eyes of fear, some with eyes of hope and some with eyes of excitement for they know they are taking their child home

there are tears of joy and sadness

there is the smell of soaps, towels, blankets, etc. that when you leave and smell later in life will bring back the feelings of the current stay

There are a lot of alarms. If you can imagine...Emylie had 6 IV pumps for meds, an iv fluid pump, pump for her milk, her ventilator and then the monitor for her heart rate, blood pressure, respiratory rate and oxygen saturations. Some pump alarms you get used to and you know they are minor...perhaps a medication needs a refill or her milk has run out. The alarms that you don't get used to are her vent alarm and the monitor alarms for her blood pressure, heart rate and oxygen saturations. When the monitor alarms go off, the alarm sounds in her room and then also in the hall where the nurses and therapists have desks. These ones make my stomach sick. If I step out of Emylie's room and walk down the hall to get water or use the restroom and hear the alarm overhead I get a pit in my stomach not knowing if Emylie is okay or not. When she was in a room with another child, you couldn't tell who's alarms were going off until you looked directly at the monitor. When you sleep you hear them but cannot see them.

There are cords....tubes....some more cords and more tubes.....
stuffed animals are used to prop legs and arms...

There are kind nurses, nurse practitioners, doctors, respiratory therapists, techs that all help to make a difference in your child's life. Emylie has been on droplet precaution, so when they come in her room they are supposed to wear a yellow gown, mask and gloves.

Caring family and friends stop by, call, text, email, send gifts and sweet valentines, etc. to give support...

There is a darling patient fighting as hard as she can to get better. Her parents, sisters, family, friends and even people we don't know praying every day for her. A little patient who is an amazing little girl who has made the world a better place and who is perfect and a dream come true.

A little girl who makes me so happy! I can't wait to get her back home.

PICU - day 14 Rounds...

Dr Bennett and Deb T. the nurse practitioner came by around 10:00 am for rounds. They are happy to see how well Emylie is doing. For today they are increasing the amount of fluid Emylie gets by 5cc/hour for a total of 38cc/hour (28pediasure and 10water). 5 cc= 1tsp. They felt she was ready to have her PEEP weaned down to 7. She no longer needs scheduled blood gases or daily x-rays. They want her to get an IV in and have the PIC line removed. The PIC line is a central line to the heart so has a greater risk of infection. She is doing well enough and off all her IV medications that they no longer felt she needed it! They want her moving around as tolerated and will have physical therapy start coming in to help her build up her strength.
So that was the plan....within a half hour the respiratory therapist came in and turned her PEEP down to 7. We read some Valentines from so many of you. She was excited to see them and would ask for more. We didn't make it through all of them before she wore out. By11:15 am the IV team came and successfully placed her IV in her left foot. I was so so grateful the lady got it on her first try! That doesn't always happen for Em. While the nurse was getting ready to remove the PIC line I asked if it would be ok to paint Emylie's nails. The nurse said yes and Emylie clapped. Once the IV was securely in place the PIC line was removed. To remove the PIC line, stitches have to be taken out and then the line is pulled out. Emylie didn't care for it to much but did fantastic as she always does. Her tolerance for this kind of stuff amazes me. She still can get anxious/nervous and cry but she handles it well overall. Around 12-noon I GOT TO HOLD MY BABY!!!! Yes that is right, we got a rocky chair next to her bed and with the help of a 2 nurses they were able to juggle all her cords and tubes and she and I got to snuggle. It felt so nice to hold her! I have scene how weak she is lying in the bed but holding her reinforced how weak her entire body is. She still is a little jittery but nothing like last night. A short time later we got Emylie back in her bed and within a few minutes she was sleeping comfortably. She has almost been sleeping for 2 hours. I am glad she is getting her rest. I am not sure when to anticipate her coming home and how she will be when coming home either but I feel we are getting closer and closer to getting her home. I am so grateful she is alive and making progress. Prayers are being answered, thank you for each one!

PICU - day 14 - Monday

The morning started off early...4:30am Emylie got her morning chest x-ray. I was worried that she wouldn't be able to get back to sleep but she only opened her eyes for just a minute and was back to sleep before the x-ray machine was out the door. The nurse said he had to suction her about every hour to 2 hours and was getting a good amount out. She only needed 35% oxygen through the night until about 6:45-7:20am. Paul had to turn her up to 45% because she was desatting and requiring more frequent suctioning. They had me leave for shift change a little after 7. Emylie was awake at that time and thankfully she was okay with me leaving the room. When I came back in, she was watching Dora and had her Minnie and two horses on her lap. She asked for her red and then blue chapstick and applied each one. She looked so tired. I asked her if she was tired and she shook her head no. I started to tickle her face and her eyes closed. She held my hand for a little bit and then was fast asleep. I am grateful she is able to get some sleep. I know that is going to help her get better.
I am waiting for the doctors to round to get the plan for the day....

PICU - day 13 - Sunday

Yesterday Emylie had a good day. Saturday night they weened her PEEP down to 9 and she did well with it. By morning she was on 35% oxygen and her oxygen saturations were 95%. They took out the arterial line in her right foot and weened her PEEP down to 8 in the morning. She was on 35% oxygen throughout the day and awake and playful. They also weened her off a couple medications and added morphine. She seems to have more strength then she did yesterday. She is jittery and loves to put on her red and blue chapstick. She also enjoyed playing with the buttons on the bed that lifted and lowered the level. The night nurse, Paul and I gave Emylie a bath, did her hair and got her bedding all changed. She did not sleep at all during the day and by 5ish was so tired and emotional but didn't fall asleep until 11:30pm (I thought the bath would help her fall asleep but it didn't)! I was falling asleep in the chair next to her bed waiting for her to fall asleep. Over all it was a good day for little Em.
She had her Grandpa and Grandma H and Dayna stop by for a visit. She cried when Dave left to go home, when her grandparents left, when Dayna left and even cried when the night nurse Paul walked out of the room. Oh, and she wanted her curtain open so she could see out into the hall and when someone would close it to try and let her sleep she would cry until we opened it.
It was so nice to see her even more alert today. She has more secretions in her trach and needs more frequent suctioning. They have said they expect to see more secretions as they turn down the PEEP. With such high PEEP levels it pushes all the secretions to the outsides of the lungs, then as they turn it down it allows the secretions to mobilize more and come out.
Emylie still cannot speak. She tries really hard to mouth what she wants to say and she will sign too if she knows the sign. She is such a tough little girl with an incredible amount of patience. I am so grateful to see her improving.

PICU - day 12 - Saturday

What a difference a day can make!
7:00am the nurse turned Emylie's oxygen down to 40% (he weaned it down through the night). The nurse was able to gradually get her down to 35% fio2 (oxygen) and her oxygen saturations were mostly in the mid to upper 90's. Yahooooo! That is super exciting. The swelling in her face is gone, she can open both of her eyes. She is more interactive. When I got to the hospital today she had a horse on her lap. She didn't want to let it go very far. She watched a little Mickey Mouse cartoons and also kept her Minnie Mouse close by. Seeing her eyes and a little smile lifted my spirit tremendously. I got to see a little bit of my little girl. She even held her arms out for me to give her a hug. Man I have missed her!
Joanne Beckstead came for a visit and brought Emylie darling magnetic dolls. She also brought some soup and veggies. The veggies totally hit the spot...I haven't had much the last few days. I truly appreciated Joanne coming by. I feel a special connection with her. Her darling daughter, Bri, was born with Spina Bifida much like Emylie. I felt like I could have talked with her for hours. Thanks Joanne for the visit!
Grandpa and Grandma H. Uncle Kent and Aunt Sherrie came for a visit just after. Emylie was awake during their visit. They brought some new little books and read a little with me and Grandma. She played with the clip on the badge I have to wear that says I am Emylie's mom.
She had a good day. She is still very sick and getting lots of support. Her movements are slow and weak. We are on the right track. At 7:00p they had us leave for shift change. She started to cry... it broke my heart. Thankfully Nate the nurse was willing to read a book with her and told her we would be back. I am so tired right now and really am not sure if any of this makes sense. I try to read over it and it feels foggy. So I am off to catch some zzzzz's. If you have questions let me know....if this doesn't make sense....sorry.

update coming....

I am sorry I have not posted since yesterday morning. Thankfully, Emylie did not take a large step backwards and stabilized yesterday. She is doing well today. I will try to post more details later this evening.

Thank you, thank you for the thoughts and prayers!!!

PICU - day 11 - Friday

This morning in between 7-8:00am, Emylie spiked a fever up to 39.5C (103.1F). The nurse gave her Tylenol and Motrin about 8:30am. The sent blood and urine for cultures to see if anything new has grown. They had shortened her i-time (inspiratory time) earlier this morning. She was on 60% oxygen with her lungs sounding coarse on both sides. Her work of breathing was still labored. She was using her neck muscles to breath and had nasal flaring. I am not sure how she would still have nasal flaring if she breaths through her trach and not her nose, but she did. She had blood around her trach stoma still and they are unsure the source. Her liver was further down her abdomen, which is a good thing. The 6:00am blood gas results: ph 7.43, co2 39, po2 57 and bicarb 25.7.
During rounds the medical team discussed considering the possiblity of paralyzing her again if her work of breathing increased. They wanted to decrease her pressure support 10 (the respiratory therapist made that change at 9:45). They added another antibiotic called vancomycin because of the high fever this morning. She still has the PIC line and the arterial line. They have added 5 cc of water each hour to be given through her g-tube. If she does well today the will decrease the PEEP to 9.
The day started off with ups and downs. Thankfully her fever went down by 9:32 am she was 37.6C. Her breathing wasn't as labored through the day but she still needed about 60% oxygen. When they tried to cath her to get urine for the culture both nurses were unsuccessful. They then had me try and I didn't have much trouble at all. I always get worried that I wont be able to cath her when others are standing by, so I was grateful I was able to do it. One of the nurses figured I should get her paycheck for the day...
Emylie woke a little bit for short periods of time. Her face was still swollen especially on her right side. Her poor eye was so swollen you could see all the veins. I think it probably hurt to try to open her eyes. By the afternoon the swelling had gone down a little.
Dr. Larsen (one of the attending doctors) stopped in to say hi. She had just finished her night shift. She is such an amazing lady. I am so grateful to know her and enjoyed the visit. A short time after she left, my brother, Matthew, surprised me and came for a visit. :) He was so kind and took the day off to be with me. A little bit later Dayna came too. And then a little bit after that, my sister, Michelle and her sweet daughter Kaylee stopped by on their way out of town. I asked Kaylee and Matthew to put some window clings on the window for Emylie to look at. It was sweet to watch Matthew ask Emylie where she wanted each one. It was nice to have someone to visit with and help pass the time. In the evening Grandpa and Grandma P. stopped by for a visit. Emylie was so sleepy when they got there....I told her they were here and she opened her eye for a second but she was so tired she couldn't keep them open.
Living in the PICU is stressful. It is a roller coaster ride that sometimes feels like every minute you have an up and down and then sometimes those up and downs come a little slower. You cannot see the track in front of you so you never know what to expect or plan for. You just have to hold on with faith and pray you can stay in your seat.
By 7:00pm they had decided to just let Emylie rest through the night. They were not going to change any of her settings. I was so grateful they decided not to change anything. I felt that she needed to just stay where she was at.
Dave came to stay the night with Emylie. He is such a good dad and I am sure he wishes he could be here more. I was having a hard time thinking of not being there but feel a little worn down. So I will head for home and try to get a better night sleep...

PICU - day 11

It is 2:55am. Emylie is working harder to breath (breaths per minute were in the 40's now 60-70's), she seems agitated, her heart rate and blood pressure are elevated. Her po2 on her blood gas is lower (68 to 58) and her chest xray looks a fair amount WORSE (either collapse or worsened pneumonia), especially on the right side.
The fellow doctor, Carrie said that they made and "aggressive" wean on her PEEP last night in order to try and minimize the air leak that is causing Emylie's face to swell. It is a fine line and they are trying to figure out how much PEEP will keep her lungs open without causing a lot of air leak. The radiologist and Carrie were discussing ideas...because the air is around her heart, in the mediastinal area, the radiologist believes that the main branches of the lung, the bronchi possibly were injured and that is where the air leak is. If this is the case it usually resolves on its own. How long does it take to heal....days to weeks. Carrie said it doesn't necessarily mean you don't see improvement in that time but it can take that long for it to completely heal.
Carrie's goal for the rest of the night is to keep Emylie comfortable, she is hoping that her work of breathing can become a little more relaxed. They increased the PEEP up to 10 (was 8) and dropped the size of her breath - which hasn't made a difference so far. She added a bolus of lasix because they also thought they saw more fluid on the xray. They have given her extra medicine for pain. They will repeat an xray at 8:00 am. Her temperature is up to 37.7C. Nate, the nurse thinks it will take a little time to see if there is improvement.

PICU - day 10 continued....

Emylie has had a mellow day. She tolerated the vent changes from this morning. I think I had mentioned that the left side of her face was swollen...well now both sides of her face are swollen and the figured out the cause. Simply put...she has air in the tissue in her face. I will try to explain it as Nate, the nurse did for me. In relationship to this picture: On the left lung along the bottom you see what looks like grapes at the end of the branch, these are called "alveoli". They are all throughout the lungs. Alveoli are tiny grape-like sacs where gas exchange takes place in the lungs (oxygen and carbon dioxide). When you breathe out, the body delivers carbon dioxide to the alveoli, and you release it in your exhalation. When you breathe in, oxygen fills the alveoli and then enters the blood, so it can be delivered to the rest of the body (Wikepedia).



The alveoli have blood vessels running through and around them. If your lungs are inflated to much then it can cause the alveoli to enlarge and restrict the exchange of gases. The alveoli next to the outer edges of the lung may have broke and let air escape into the surrounding tissue. If the air escapes on the inner side of the lungs (closer to the trachea) it will escape into the mediastinum and then can travel up the neck and into the face. This is what the believe has happened (it may also be related to when the chest tube was pulled out or a combination of both factors) and why Emylies face looks swollen. She also has a little air in the tissue in her collar bone area and some in the abdominal cavity as well. Poor girl can barely open her eyes and has chipmunk cheeks. They will continue to follow this on xray and make sure it does not affect her breathing or anything else.

Emylie and I took a nap at the same time this afternoon. Crystal the nurse kept the door closed so it was quiet. I didn't sleep well at all last night so it felt good to get a little rest in. I almost forgot to each lunch too...Crystal reminded me at 3:45 that I hadn't eaten. She was so kind to keep me in line. :) I went and got something to eat, took a short walk outside and then stopped by the KSL radiothon. It was fun to see all the volunteers answering the phones to take donations for Primary Children's Medical Center. A short time after getting back to Em's room Cory Kartchner (one of the Nurse Practitioners), stopped in to see how Emylie was doing. He, Crystal and I visited a little, I got to see pictures of his darling children and hear some fun stories. We originally got to know Cory and Crystal during Emylie's first PICU stay.
My cousin Curt brought Dave and I some dinner and stayed for a visit. Dave got to visit with him (I went home for bit) and also with Eric Bowles the first nurse practitioner we met during Emylie's first PICU stay. The nurse practitioners are amazing and have always been so helpful to us. We would not be where we are today without them and they each have a special place in our hearts. It wasn't until this visit that we have also gotten to know a couple of the Attending physicians which we are growing to love as well. We feel so blessed to have people who really care about Emylie watching over her care.
Sometime after 8p tonight, Dr. Larsen and Grace, the nurse practitioner checked in on Emylie. Dr. Larsen turned the PEEP setting down from 11 to 8!!! I wasn't hear when it happened and so my first reaction when Dave told me was "WHAT! - that is way too fast. It is only supposed to be one every 12 hours. Slow and steady....that is too fast." After further explanation from the nurse I felt a little better. I would be lying though if I didn't say I still was concerned...I don't want to go to fast and have her have to go back up. But they felt confident in the change and Dave said the doctor stayed at Emylie's bedside for at least 20 minutes to see how she handled the change.
I think that is about all for today. Emylie is sleeping comfortably right now. She will occasionally lift her right arm up and then back down. I am grateful for the progress of today!

PICU - day 10

Emylie had a fairly good night last night. Her breathing was a little labored, so they decided not to wean her PEEP for the night. She also had a little bit of a leak around her trach. The nurse, Andrea #2 (only bcz this is the second Andrea that has cared for her this stay) would often have the respiratory therapist come check Emylie and they decided that because her sats were good they didn't want to add any more water to the cuff. She also spiked a fever of 38.9C, so they sent a blood culture. She got a chest xray this morning at 4:30am. With the movement she woke up a little. I was standing at her bedside. She raised her right hand a little, keeping her fingers close together and then tried to mouth something...she was asking for her Binky! :) I asked her if she wanted pink or purple and she mouthed "pink". When she tried to speak, her mouth moves very gently and slow. It was a sweet moment. The nurse also said last night she put chapstick on her lips and asked Emylie if she wanted to taste it and Emylie tried licking her lips. :) She had a lot of nasal and mouth secretions which are incredibly thick because of the meds. Last night Andrea even had to get a larger suction catheter because the other was getting plugged...ok sorry if that was to much info.
This morning during rounds they decided to cut her PEEP from 12 to 11, turned down her breaths per minute from 31 to 20 and turned her pressure support from 14 to 12. The discontinued her lasix. They inflated her cuff a little, thinking that perhaps that swelling has gone down so that is why she got a leak. Her chest xray doesn't look worse, other than she has a little air in her soft tissue on the right side up by her neck and a little lower by her abdominal cavity, probably from taking the chest tube out. They feel it should absorb and not be an issue but they will monitor it with daily chest xrays. I had stepped out of the room for a minute to get a drink and when I came back, the left side of Emylie's face was swollen. :( They are wondering if it is positional, so they turned her on the right side and will see if anything changes and go from there.
I think we are on the right track.
Dr. Tell Bennett says...slow and steady wins the race.
Thanks again for all the prayers!! Thank you for all your support it helps immeasurably.

PICU - day 9 Will my nerves last?

Of coarse they will but boy oh boy I have so much anxiety and worry right now. Emylie has had a good day. I mentioned that she responded earlier. As long as she does well they are not going to put her back on the Vec (paralytic). So she will occasionally move her arms, open her eyes, sign I love you when I tell her I love you (this time her fingers were in the right position too) and is able to breath above the vent setting and lots of other things. She now shows discomfort when they suction her mouth and nose. She tried to gently move the nurses hand away from her nose. She had so many secretions in her nose it was unbelievable. When the nurse was done suctioning her nose it sounded like Emylie had a air leak and we heard a little noise. The nurse suctioned Emylie and then called the respiratory therapist who said it could be positional. So they repositioned her and so far so good. Having a leak (air moving up past the trach) around her trach at this point would be unsafe for her. While the RT was here Emylie's vent popped off the trach. It was quickly placed back on and Emylie was fine.
With the combination of those two things my nerves are all over the place. I am worried about her moving enough to pop the vent off and the nurse not responding quickly enough. Not because I don't think she is qualified but for the times Emylie's nurse might ask another nurse to watch her while she runs to the restroom or goes to lunch. I told the nurse she can wake me up when she goes to lunch and I will keep an eye on her.
I am scared... I am going to go say a prayer now to help her and me. I think I am going to be sick.

P.S. thank you for praying for Emylie today!