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!!!!!!!

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......