PICU - day 6 Sunday

How is Emylie doing?

She is stable yet still very very sick.

Dave stayed with her last night and sent me a text this morning to let me know that she had a good night, her temp was 37.5C (99.5F) and her oxygen saturation was 95% on 60% of oxygen.

Dayna came up to the hospital to sit with Emylie for a few hours so Dave came home for a little bit and then we both came back.

While we were at home I got a phone call from Emylie's nurse, Crystal. She wanted to let me know that Emylie's CO2 level was 70 (normal range 35-45). They changed a couple settings on the ventilator (PEEP - was at 16 dropped to 15 & PIP - was 34 and increased to 35). They were going to give her an hour and take another blood gas to see where she was at.....if her numbers didn't improve they were considering putting her on the oscillator (a more advanced ventilator). Even though this news was not awful, being at home and getting it did not help with the anxiety. I was painting Ellie and Elizabeth's fingernails and trying to have some quality time with them when the call came (Don't get me wrong, I am glad they called...I would have been upset if they hadn't). And after I just felt sick to my stomach and wanted to jump in the car and leave. I held myself together, had lunch/dinner with the family. Just as we sat down to eat Dayna sent me a text informing me that Emylie's CO2 had dropped to 62. While this is still high and above normal it is better than 70. Because her lungs are so sick it would be difficult to get her CO2 in the normal range so they tolerate a little higher level...just not as high as 70.

This morning the also tried to take her off the paraletic which they ended up putting her back on. While she was off of it, the nurse was changing her diaper and Dave saw Emylie try to open her eyes. He waited until they were done and started talking to her. He said she tried to say something (with her eyes closed) and would nod her head yes and no. He said it was pretty cool. Doesn't that make you smile??? It did me.

When we got here, she was sleeping and looked comfy. The nurse gave us the updates. Her fever is up above 101F again, but that can be expected a little because of the new antibiotic doing its thing. (Thanks Dayna for letting me know to watch for that).

My Uncle Bryant, Aunt Emily and two of their boys, Rendon and Sheldon stopped by to see Em. Parker...I am sorry you did not get to come in, but thanks for watching your sisters so your parents and brothers could.

Emylie still has extra fluid in her body, but today her body including feet and hands are warm. She is a strong beautiful little sweety and I look forward to getting her well and hearing her voice and seeing her beautiful blue eyes. Sweet dreams my little angel.

PICU day 5-- Saturday

Around 5:40 am a chest xray was done. The findings the pleural effusion on the right side had increased. The Nurse Practitioner placed a pig tail chest tube on the right side without any complications. As of right now it has helped drain about 80cc of fluid.
They tried to take Emylie off the paraletic (vec) but ended up putting her back on because her oxygen saturations were dropping. They also tried to turn her PEEP setting down to 14 from 16 but ended up turning it back up as well because of her oxygen saturations dropping.
When she came in on Tuesday the did a protective brush, which is where they take a tiny brush and put it in her trach and down into her lungs to get a sample to culture. This morning the final results came back, the bug it grew is resistant to the antibiotic she has been on so they had to change the antibiotic. (it grew:
Corynebacterium; Strep Pneumonia resistant to climdamycin; So changed to levafloxacin) (Few Pseudomonas sensitive lexofloxacin and getnomicin) (The items in the last couple parenthesis are just some notes for me...)
Her O2 has been the same as yesterday with some occasional ups and downs.
She has a Lasix drip (to help her get ride of the extra fluid) and is having good results with her output.
Her Girth (abdominal measurement) is 52 from 54 (was 44" yesterday)

She has had a stable day. I am sorry I don't have a lot of details and some of the details wont be of interest to you, but I needed to have it written somewhere. She is still very very sick. Please continue to pray for her.

PICU day 4 - less crisis a little calm

Today was a calm day. Emylie is still sedated and on a paralytic. She sleeps and sleeps. She continues to run a fever. Her chest xray from this morning shows she has a pleural effusion on both the left and right side. She had a small one on the right side earlier in the week, it went away and now it is on both sides. The dr decided to give her a diaretic because she is not getting enough fluid out. They are hoping they will see the pleural effusions go down as a result of the diaretic also. I believe it was in the afternoon that they decreased the paralytic medication by half to allow her to have small movements. Overall it was a day of resting for her.
My sister, sister-in-law, brother, Dayna and the Edens all came to visit which was really nice. My oldest brother lives down south and is a paramedic, he had to bring someone to Primary's and tried to stop by and see Emylie but it was after visiting hours so they wouldn't allow him to go in.
Thank you for all your prayers for Emylie. I know the Lord is listening!

My heart hurts so bad. I am scared. I am worried. I am praying. I am hoping.

I am praying that Emylie gets better. Ellie asked me at the beginning of the week if Emylie was going to make it. I confidently told her yes. Last night I went home for a couple hours. I didn't have to say it, I am sure it was written on my face.

Ellie said, Mom she is going to make it. She has stuff she has to do first before it is her time. Little did Ellie know how much I needed to hear that. And how often I have and will continue to play it in my head.

What a day!

I am not sure where I left off so if I repeat myself just don't say anything...and if I sound negative it is the fear and crisis I am feeling.

After the trach changes Emylie was still struggling. Her sats were maintaining in the 80's (remember we like 91 or higher). The doctor talked to me about giving Emylie a muscle relaxer to help her relax. I was nervous about it but felt it was best for her. So they order was made and it did help. I laid next to her in bed. Her nurse, Andrea was awesome and said they would work around me because Emylie needed me there. I tried my hardest not to cry because I wanted to be strong for Emylie, but the tears just kept coming. So then when Emylie would look at me I would try my best to smile through the tears and quivering lip. She was so uncomfortable and shaky. They had given her 2 albuteral treatments back to back which caused her to be jittery. I asked her if she wanted me to sing to her. Remember now, that because of the cuffed trach she cannot make noise, she cannot talk. So as best as she could she nodded her head. I sang the wheels on the bus and with her left hand she did her best to sign the wheels turning and "all through the town", next was the doors opening and closing, the driver saying move on back, the wipers, the baby, the mommy and the horn. Watching her try with what energy she had to do the actions broke my heart and made me happy at the same time. How did I get so lucky to be her mommy? When she got her trach, she could make sounds...nothing...it was heart breaking. Yesterday was even more heart breaking because she would try to talk but nothing would come out. She couldn't tell me what she wanted or needed, or if something hurt. IT WAS AWFUL!
Around 4:30pm it was decided she needed a PIC line and an arterial line. The process was put in place. They gave her more meds to put her to sleep and relax which thankfully helped her oxygen saturation improve. I was able to sit at her bedside and hold her hand. The PIC line was placed. The arterial line took a few attempts. I ended up heading home so I could see Ellie and Elizabeth before they fell asleep and Dave stayed by her side. They got the line in her right foot. From the arterial line they can draw blood, have a constant blood pressure reading and also a constant temperature reading. Her blood counts were low so a blood transfusion was ordered. She has had a fever of 39+C through the night. She is so so sick but I hope and pray with all I have that today will have been the worst and that each day forward she will be on the road to improvement.
She has not been this sick with a virus before and this has been rough. She is strong and is a fighter! And I LOVE HER so very very much!

Thursday Day 3 in PICU

Today has been a hard day for Emylie. Her breathing has still been labored, she has been on 7 liters of oxygen with sats ranging from 88-91%. (To give you and idea - she usually is not on oxygen while she is awake and up to a 1/2 liter while she is sleeping with sats 91-100%). At times she has been up to 10 liters. Her chest x-ray this morning looked worse than yesterdays.
It was decided that she needed a larger trach. That even if she was healthy she probably had outgrown the one she was in. At about 11:00am they put a 4.0 trach in. Everything went smoothly - a big relief! We saw some improvement, she was sleeping. I stepped out to get some food, came back and Emylie was on a different ventilator. I felt terrible I wasn't there for her while they were changing this around. She was also on 100% oxygen. With the oxygen and ventilator she still wasn't ventilating well enough. So they decided to put a cuffed trach in (once you get the trach in her trachea a small balloon is filled which doesn't allow air to go up past the vocal cords and out the mouth and nose). The nurse and the respiratory therapist were changing the trach, the attending doctor, Dr. Larsen was watching and advising and I was trying to offer comfort to Emylie. They put the trach in and they were not able to suction her. They tried again and no success. Her sats were dropping. I was so glad to hear Dr. Larsen tell them to put the other trach back in. I grabbed a new one and handed it to them and it smoothly went in and her saturations went back up. Reinforcements were called in (i.e. Chris Hartling - the most amazing respiratory therapist and source of comfort available to a parent of a trached child. She is wonderful). She had another cuffed trach to try and she came and put it in. That trach change went well. So within 3 1/2 hours Emylie had 4 trach changes. And unfortunately with the cuffed trach she will not be able to talk. :) I am grateful that as she gets better she will go back to her regular uncuffed trach and be able to speak and sing. Emylie is a trooper and AMAZING!!! Her fever is back up to 39.1 C (102.4 F). They did another chest x-ray and that showed some improvement over the one this morning. She is sleeping now and looks as comfortable as possible considering what she is going through. She has Minnie by her side and her jacket next to her pillow. She is ready to go home. I pray that the 2nd half of the day will be better and that she will be on the road to recovery.

A cute storie...last night when Dave got here she was tired and bothered by them tech poking her finger and the treatments and whatever elese that was happening at that time. He got "Peponi" on his phone (Emylie LOVES this song...) and for a little girl that didn't talk very much through the day or say a lot she calmed down and with her binky in her mouth sang, "Pepo, pepo, peponi, pepo, pepo, peponi." She is cuter than words can express and I love her more than words can express!

Admit to the PICU...

Emylie started running a fever last Friday. She then started having increased oxygen needs and eventually labored breathing. We took her to the doctor on Monday. Her right ear was infected and her viral panel all came back negative. By Tuesday her breathing was even more labored. I think I knew the moment she woke up that she needed to go to the hospital. Shortly after she woke, Emylie's pediatrician called to see how Emylie was doing. I told her and mentioned that I was nervous. She asked that we bring her back in so she could listen to her lungs. Dave came home, we took Emylie to the dr. and as soon as she listened and saw Emylie she said she needed to go to Primary's. An ambulance was called. We packed up and were on our way with lights and sirens. Emylie asked to go home and where her daddy was from the time the nurse was getting her vitals at the doctor office till the time we got to the ER. She then continued to ask to go home. She would tell me she was better I think in hopes I would believe her and take her home. After her iv was placed they told her they were done, so she asked me to put her jacket on....I think she thought she was all done and could go home.

She was admitted to the PICU with pneumonia and later also found out she has metapneumovirus (apparently it has peaked and there are lots of kids here with it). She continues to have fevers even with Tylenol and Motrin. She seems very uncomfortable and her lungs are coarse. She still asks to go home and wants keeps a close eye on where I am at. She has talked to her sisters on the phone a couple times (which she loves and it is adorable to hear her communicate with them). She has had visits from Grandma H, Daddy and Sarah (her school nurse).

About 20 minutes ago, they adjusted her vent settings to give her a little more assistance. They say the virus she has doesn't usually cause the high fevers she has had. We will see how she does with the vent changes and go from there.

I am grateful for wonderful friends who are helping at home and making it possible for me to be here. I am grateful to be here with Emylie. I am grateful for the great medical staff that is available. It is difficult to see Emylie so uncomfortable. Please pray for our sweet little girl. :)