To the Music Therapists Who Sang My Daughter to Sleep

November is the month of Thankfulness and there are 2 people I am thankful for today. The problem is, I don't know how to tell them, since I don't remember their names.

To the Music Therapists Who Sang My Daughter to Sleep,

My 2 year-old daughter was in rehab in the Neuro Trauma unit of Primary Children's Hospital recovering from a very serious illness which had affected her brain. It was early September, 2014.
I was excited for you to come! I love music, and believe in it's power to help other's heal and stimulate development. You came prepared with your guitar and gave my daughter instruments to play along to fun songs designed to help her recovery. Her participation was minimal and it soon became clear that she was too tired to cooperate, and how do you persuade a struggling toddler? Wanting to help in any way you could, you offered to sing her to sleep.
"Are there any songs she likes to fall asleep to?" You asked.
"Do you know any primary songs?" I replied
In my church we use primary songs to teach children about Jesus Christ and God's plan. I don't think you were members of my church, but you did know one song - "I Am A Child Of God." You began to play. I sat there on the bed of the hospital room cradling my daughter, rocking her like a newborn, and I sang along.

"I am a child of God
and He has sent me here;
has given me an earthly home 
with parents kind and dear.
Lead me, guide me.
Walk beside me.
Help me find the way.
Teach me all that I must do
to live with Him someday."

I began the second verse; "I am a child of God, and so my needs are great." That line was all I could manage before the sobs came. I was overcome with thoughts of the great needs of my beautiful daughter, struggling to recover from this serious illness at such a young age. God had given her to me and it was my responsibility to take care of those needs. I thought of my own great needs as I was also struggling through this very difficult time. I thought of all the people God had sent to me to help me with those great needs - including the two of you.
You continued to play and hum along to the sound of my sobs. You respected my pain and sustained me with your heavenly tune. Your music brought such great comfort as I felt the love of the Lord for me and my daughter. My weeping was an essential release, a way to remove some of the stress that had burdened me for so long. Your beautiful music made that possible.
I believe that music can bring peace, hope, and healing in a most beautiful and powerful way. It connects us to those around us and reminds us that we are not alone in our emotions. Your music did that for me.

Thank you, for helping in any way you could.
Thank you, for using your amazing talents to benefit those who truly need it.
Thank you, for knowing the song which meant so much to me.
Thank you, for respecting the struggles of me and my daughter.
Thank you, for facilitating that therapeutic release of pent up stress.
Thank you, for finding the beauty in my pain and struggle.
Thank you, for sharing your love with me, and reminding me of the love of God, family, and friends.

I still weep when I think of this powerful experience. You cannot know the effect it has had on me, or the effect you have on all those you work with. My daughter probably doesn't remember you (I don't think she remembers anything from her time in the hospital) but I will never forget the power you gave me.

Thank you.

Sincerely,
Melodie, the weeping mother.

Complications

Allow me to give a brief explanation of her illness to help you better understand. In the words of my husband, "It's kind of a chain reaction. The specific strain of E-coli produces a toxin. The toxin wounds the inside of the microscopic vessels in the organs and breaks down blood cells. This causes clotting that basically shuts down blood flow through the organs. Usually brain, kidneys, and pancreas, but sometimes the heart, liver, or other organs. Until the body can break down the clots AND repair the micro vessels, her body just needs to be supported." 
On day 4 she began to experience complications from all the fluid retention because her kidneys weren't filtering out enough fluid through her urine. She began to experience fluid build up around her heart causing a heart "gallup", fluid around her lungs making it more difficult for her to breathe on her own, and she got a fever. Then, when they started giving her nutrition through tube feeds she developed pancreatitis (inflammation of the pancreas). The complications also meant that it would be a while before she could come off the breathing tube. All this bad news was very hard on me and I began to feel very frustrated and helpless again. I was angry at the doctors for giving her so much fluid when they could have prevented this by scaling back. We discussed this with them and they finally reduced some of her fluids, although she had to receive some because she was getting her meds through the IVs. The doctors increased her dosage of diuretics and we began to pray for her to pee more. She needed to release all the fluid inside her!
When that didn't work fast enough, they finally decided to give her dialysis on day 5 (Aug 9). Dialysis is basically where they use a huge catheter in her jugular vein to draw out blood from the body and filter it through a loud, whirring machine to remove toxins from the blood. The machine can also remove some of the excess water from the body in the process, if necessary. However, it became more complicated than that. For the process to work the catheter had to be stable and in just the right position. If it began to lose it's integrity it would have to be replaced. Also, any clots or blockages in the machine can cause the whole thing to shut down. In this case, any blood that is in the machine when it shuts down cannot be returned to her body, so she would have to have a transfusion to replace the lost blood. During her dialysis treatments we dealt with these obstacles often.

Paisley is attached to the dialysis machine, named "James Bond" because it's number is 007.

Although the machine was loud, bulky, and complicated, this treatment was a huge help to her. we could see the swelling slowly go down, starting in her hands and feet, and gradually moving to her face and body. The fluid in her lungs decreased fairly quickly and we were able to do "trials" off the ventilator, which is where they turn it off for a little while to see how she does breathing on her own. She was doing well. She also began to pee more as a response to the medications. It was a relief to finally see some real progress, but she still had a long way to go.

The orange tube going into her nose is how they gave her liquefied food while she couldn't eat on her own. The tube coming out of her neck is the dialysis catheter where they drew out and reinserted her blood. The tube in her mouth is the breathing tube. I don't remember what the sensor on her forehead was for.

Paisely still had a Pericardial Effusion (fluid around the heart) Pancreatitis, and major kidney damage her body was trying to heal and this took a toll on her body. In addition, although the dialysis helped a lot, it does damage the blood cells so her body had to deal with that as well. 

My next focus was getting the breathing tube out so she could breathe on her own and come out of sedation. It seemed like this was always delayed by something. When they put the tube in, we didnt realize how difficult it would be to get it out! The doctors were very cautious because having to put a breathing tube back in again can hurt the throat. I was confident she could breathe on her own, but I figured the doctors are the experts and "better safe than sorry", so we waited.

Day 6 was a Sunday. Myles and I decided to let the nurses watch over Paisley for 45 minutes so we could go to a sacrament meeting our church provided in the hospital for patients and their families. I remember the talks and music were beautiful. I felt they were specifically planned to provide comfort and strength to families in our situation. I felt strongly that Christ was there with us. His atonement enabled Him to feel the suffering of our daughter and ourselves. He could comfort and strengthen us because He had experienced it and knew how to overcome it. I felt the love and grace of our Savior lifting me, giving me the strength I needed to get through another day. I was so grateful for that service by our church and I knew I had a huge support system there for me through the Church of Jesus Christ of Latter-Day Saints.

I know that the Savior did suffer for us, every specific pain, illness, and sin so that He could succor us. I know it because He came to my aid that day.

Welcome to the PICU

After that first night, most of our time was spent trying to figure out exactly what was wrong with Paisley, and what treatments would be most helpful to her. Some were simple things like putting a guard in her mouth to stop her grinding her teeth, but many were more complex. They ran lab tests multiple times a day, testing for everything you can imagine. They told us she was experiencing kidney failure. We discovered that she did have E-coli in her urine creating a urinary tract infection, so they put her on antibiotics for that. However, it would take some time to get the lab results back that would confirm whether or not she had HUS.

Our time in the PICU was a series of up and downs. If Paisley was showing good signs we were hopeful and happy. If anything went wrong or was not getting better, I was dejected, emotional, and frustrated. I noticed the more informed I was about Paisley's condition, every treatment, and her illness, the less worried I would be, but confusion and impatience made me frustrated and sometimes even a little angry. I learned to always ask questions and seek reassurance when worries were plaguing me.
Based on her symptoms, the doctors were concerned that she might have Thrombotic Thrombocytopenic Purpura (TTP). Comparing that to the possibility of her having HUS, TTP would be the more serious condition because the outcomes are generally worse and the condition is usually genetic, so it would cause chronic problems. Although the doctors still didn't know for sure the cause of her illness, they decided to treat her as if she had TTP because that is the more serious diagnosis, and the treatments for patients with TTP are similar and still helpful to those with HUS. They recommended Plasma Pharesis (Plasma Exchange), dialysis, diuretics (medicine to help her pee), and supportive care, meaning they give her medical assistance in performing all her essential body functions. This includes IV or tube feeds, breathing tube, catheter, and various medications for blood pressure, heart rate, etc. She also had an MRI, and an ongoing EEG scan to monitor brain activity and look for more seizures. All this while she is still sedated.
The doctors informed us that she could have some brain damage caused by a lack of oxygen and blood flow in the smallest vessels in the brain. We worried, but all we could do was "wait and see". Anyone who has ever had a seriously ill or injured family knows that the "wait and see" game is one of the hardest things about the experience. They told us her kidneys should fully recover, and they were already showing improvement. We were glad for that! They told us she would probably remain unconscious for at least a few days, depending on how she responded to plasma exchange and dialysis.
We received an outpouring of love and support from friends and family via social media and phone calls. So many prayers and good thoughts were being sent our way. We could feel those prayers and thoughts buoying us up in times of despair.
It was very difficult for me to see her so swollen with all the sensors, IVs, etc attached to her because it was visible evidence of the serious battle occurring in her body. Every glance was a harsh reminder of her fragile state. I tried to be a strong Mom and be the loving, reassuring presence she needed, but I was falling apart emotionally. I felt so much love for her, but that magnified my worries. Thank goodness Myles was able to stay calm and see reason. He was able to reassure me when I began to lose it.
 On her second night, Myles stayed with her through the night while I rested in a "sleep room" reserved for family staying the night.  While I was sleeping, she had more seizures. These were the kind of seizures that are not visible to the eyes, but show up on the brain scans as abnormal brain activity. The doctors response was to put her on an anti-seizure medication since recurrent seizures can have negative effects on the brain. Waking up to this news, I felt worried and guilty for sleeping through it. I rushed to her room.
When I arrived everything was fine. By that time Paisley began showing some response to things going on around her, batting the nurse away during her sponge bath, and squeezing Myles hand. Soon she was beginning to sit up, and bat at her tubes and wires. This was a huge relief for us! It was like getting a tiny glimpse of our normal little girl. Unfortunately, the doctors had to sedate her more heavily after that so she wouldn't pull out the tubes and wires. But later that day she was able to nod to simple questions and squeeze our hands on request, despite the extra sedation. This put us in a good mood because it reassured us that her brain was working well. However we were uneasy about the increased swelling as they continued to pump in more and more IV fluids. Regardless, we went to bed feeling good about her progress.
Much of our time in the PICU was spent wondering and discussing when she would be able to get off interventions such as the breathing tube and the EEG. There were so many factors to be considered in making these decisions, it seemed like the removal of these things was always delayed by some test or setback with her health. Meanwhile, we would wait and worry, wait and worry...

Her hair was pretty wild from all the goop they used to attach the EEG sensors to her head.

On day 3 Paisley had some more tests. They took the EEG sensors off so she could get an MRI and at the time her crazy hair seemed humorous to us, although it was probably unsettling for others to see. Unfortunately, the doctors had to sedate her even more for these tests so we didn't get much visible activity from her for a few days. We killed time that day by giving Paisley a makeover.

We washed her hair and gave her pig tails.

I painted her fingers and toes. Green is her favorite color.

Soon we began to receive meals from friends, family, and ward members who wanted to help. They were delicious and a huge comfort. My Mom and Myles Mom also came to help with Laurel and provide moral support. That was another huge blessing. Our limited time with Laurel brought us joy when she came to visit.

The doctors were finally able to confirm that HUS was the illness Paisley was battling, which was good news because it meant that not only were the doctors much more experienced and able to treat this disease, but she also had very good chances of a complete recovery within a few weeks. However, it soon became clear that this case was a pretty severe case of this illness.

More to come...