Holding Her Life in His Hands...

It is past midnight, and I am finally sitting in front of my computer screen! I almost did a happy dance when it was up and running, but now I'm staring at it like my brain has turned to mush. I'm not sure that I know how to begin. I've been storing up things for days that I want to tell you, and now I'm just hoping that I don't forget it all... I will say that it is a good idea for you to have read the previous post from Loretta with all of the medical information first. This one will have more personal information because I am assuming that you already have the basic medical facts.

First of all, I just want you all to know how much you have meant to me over these last few days. Even though I was in a "computer blackout" of sorts, I could tell that you were holding us up. Each and every dark moment that we have lived through has been framed within your love and prayers. We have had moments of sadness, but not despair. I have felt your invisible arms constantly surrounding us...lifting us up, and holding us there. There have been moments when my knees should have buckled and my heart should have broken into a thousand pieces...but they didn't. I should still be in a corner weeping somewhere... but I am not. I have cried, but I have also laughed - many times.

The last time I wrote to you, things were so up in the air. I just didn't know for sure whether I should ask John to come all this way ahead of schedule when it might be no big deal. But in my heart of hearts I just needed him to come. On Wednesday morning John walked into Ellie's hospital room and I promptly burst into tears! Mom's eyes filled up with tears as well. Ellie was sound asleep in her bed. John had to pass by the whole group of doctors who were standing outside of our room doing rounds, and he said that when he passed that group then walked in to find mom and me crying, he thought that he was too late and Ellie had actually died before he could get there! Talk about your welcome home...

Within four hours of John's arrival, Ellie was taken to the "Procedure Room" to have her Broviac taken out and a temporary line put in. The whole thing took about 20 minutes and John and I were brought into a little recovery room to watch Ellie come out of the anesthesia. As she became more aware of her surroundings, Ellie began to get aggitated and maon in pain. This was a little puzzling as she was given plenty of medication to ease the pain from the procedure. The area that she pointed to that was hurting was her back - on the lower-left side. I began talking with the nurse about Ellie's kidneys and urine output to determine if that was something we should be concerned about. She noticed that Ellie's color was not good - pale yellow with colorless lips, and I had noticed the same thing. She immediately called the doctor. In twos and threes, people began coming into the room - slowly at first, and then with greater speed. Ellie was writhing and moaning, but all the while trying to communicate how she was feeling. She kept trying to say that she felt like she couldn't breathe, but the monitor showed that she was getting enough oxygen. It was as clear as day to me that she was feeling pressure that made her feel like she couldln't breathe. John and I would take turns trying to calm Ellie down while the doctors talked and began giving fluids and medications. At first I was looking around and listening to the doctors and trying to translate what Ellie was trying to say. Eventually a doctor from the Pediatric ICU at the hospital across the street (the one we are in now) came in and began doing things. From time to time I would catch John's eye. He was completely calm - there was no panic, no distress - but we shared a mutual look that said "this is very very bad... and it is really happening." It was at that point that I realized that the only thing that I could do was to keep Ellie as calm as possible. I tried to tuck myself out of the way and get directly in Ellie's face. I leaned in until my face was touching hers and begain softly singing into her ear. She immediately stilled her thrashing and screaming and as the doctors and nurses continued to work all around us, I lost all track of time. I had tunnel vision, and quite possibly closed my eyes because from that moment on, I did not see or hear anything around me. The only thing that I was aware of was John's hand gently rubbing my back. I vaguely remember singing "In the Garden" and "He Giveth More Grace" and possibly others, but what I do rememer vividly is singing all of the verses to the song "Day By Day". As I sang, my heart was crying, but the tears didn't come. Ellie needed to be calm. And so I sang these words for her... and I sang them for me:

Day by day, and with each passing moment,
strength I find to meet my trials here.
Trusting in my Father's wise bestowment,
I've no cause for worry or for fear.
He whose heart is kind beyond all measure,
gives unto each day what HE deems best -
lovingly, its part of pain and pleasure,
mingling toil with peace and rest.

Every day, the Lord Himself is near me
with a special mercy for each hour;
All my cares He fain would bear and cheer me,
He whose name is "Counselor" and "Power."
The protection of His child and treasure
is a charge that on Himself He laid -
"As thy days, thy strength shall be in measure," -
This the pledge to me He made!

Help me then, in every tribulation,
so to trust Thy promises, O Lord,
That I lose not faith's sweet consolation
offered me within Thy Holy Word.
Help me, Lord, when toil and trouble meeting,
ever to take, as from a father's hand,
one by one, the days, the moments fleeting,
till I reach the promised land.

I gradually roused from this state of intense focus to find that John and I were being told that we needed to leave the room. I looked up in confusion and saw that while I had been singing, the room had continued to fill with doctors and nurses. As we moved towards the door (John was protesting all the while - asking to be allowed to stay) I looked around and saw a few familiar faces in the crowd - Ellie's nurse at the IV pole and another nurse and a couple of doctors in the sea of faces... As soon as the doors closed behind us, I burst into tears. Eventually I calmed down. John and I sat next to Mom in the waiting area (she had been there the whole time, trying to glean information and calling people). I was astounded to know that we had been in that room for hours, not minutes. As we sat there over the next couple of hours, doctors and nurses continued to pour into the small room. I still don't know how that many people were able to fit in there! It was amazing. John was like a bulldog - anytime the door would open, he was standing up - craning his neck for a glimpse. From time to time someone would come out with an update... "We are trying to intubate her, but we're having some trouble, so it is possible that we will need to make an incision in her throat..." (I think that I felt a little faint when that comment was made.) "We were able to intubate her, but her heart did stop and she was aggressively recussitated for three minutes..." (The way that she said "her heart is beating now, though" almost as an afterthought struck me a little funny, so I laughed and said "well THAT'S good!" and she gave kind of a surprised little chuckle and said "It IS good...") "There was some bleeding in her chest, so the surgeon came up and placed a tube in her chest to drain the blood..." "The chest x-ray shows that the surgeon will need to come and move the chest tube a little..." On and on the updates went. One of the doctors from the Neuroblastoma Team came and just sat next to me. Every once in a while she would go in the room for us since she was allowed in there, and she would just check on things. The pharmacist and the social worker stayed with us for a while as well and Ellie's primary NB doctor who came to check on Ellie and see how we were doing. Everyone was just wonderful to us. No one could believe that this was happening. Finally around 8:00 p.m. (her procedure was at 2:30) Ellie was wheeled out on a stretcher and we were transported across the street to the PICU. I will spare you the details of how she looked, but suffice it to say that she did not look like Ellie.

By the time we got into the the PICU, I was dead on my feet. I had missed most of the two previous night's sleep in the hospital with Ellie's fever, and after the trauma of the day, I was DONE! I have never felt quite that way in my entire life. Even finding out about Ellie's cancer could not hold a candle to the horror of this day. Ellie was in a medically induced coma and there was nothing more that I could do for her... so I left the hospital. Mom stayed with Ellie while John walked me home. As we stepped out into the cool air, my eyes were open but I saw nothing. I held John's arm and just went where he led. As we walked the streets of New York City, tears were pouring down my face. We passed people... we crossed streets and still I saw nothing. I did have the presence of mind to wonder if I was in shock, so I suppose that I wasn't... but I felt shocked! (Shell-shocked, maybe?) We finally stepped into a little restaurant because I was so hungry that I was not going to be able to sleep over the sound of my own stomach. I still cannont believe that I could not have the decency to for once lose my appetite... that's just wrong! It was nice to have a little time with John. He then walked me to the Ronald McDonald House and went back to get Mom. (Afterwards, he went back to the hospital and spent the night watching over Ellie.) Finally, alone in my bed, I was able to cry out to God. I asked God to spare her life, but then I got so scared that she might make it through this horrible time and suffer intensely only to suffer more and die of cancer, and then I remembered Ellie's prayer to die in her sleep and I said "this is not how it's supposed to be" (because I could not fathom how this situation would qualify as peacefully dying in her sleep...) and then I got so confused about what I was actually trying to pray for that I just started begging God to do what was best for Ellie! It turns out that was the best place I could come to. The crying I did on that night was deeper than any I had ever known before, but it was short lived and I think that I fell asleep before 5 minutes had passed. I have this vague, dreamlike memory of John kissing me and telling me that Mom was home and he was headed back to the hospital.

The next morning I felt some better, but still a little emotional. The hardest thing for me was knowing what to do with myself. What I know how to do the best is to read Ellie - her mood, expressions, words, etc... I know how to help her and calm her. But this was something all together different. I looked at Ellie lying in the bed not moving and I didn't know what to do, and yet it was inconceivable to simply do nothing. Finally, Loretta made one statement that has continued to ring in my ears: "You have to think like Ellie." And so, operating under the premise that Ellie can hear everything even while she is just lying there sedated, I began to talk to her and try to address things that would normally concern her. As she started to open her eyes and become more aware of things around her, I wanted to tell her "It's o.k. - you have something in your mouth, but don't fight it - it's there to help you." but Loretta reminded me that Ellie would want to know 1.) what is it? 2.) why is it there? and 3.) when will it be gone? and 4.) say IT IS NOT O.K.!! So what we tell her is "You have a tube in your throat that is helping you breathe, I know it's uncomfortable, and it will be out soon." I have learned so much from Loretta and Melanie about how to soothe Ellie during this time and how to describe things when I get little or no feed back. I feel like I'm having to learn a new language.

John, on the other hand, has been a pillar of strength. He hit the ground running when he got here. Throughout the initial crisis John remained functional and decisive. He stayed up all night the first night and tried to learn everything that he could about all of the machines and drugs and the general balancing act that is an Intensive Care Unit. He has also helped family members find their way around the City. He is truly in "fight mode" - ready to take on whatever comes and help Ellie fight in any way that he can.

That first morning, Stan, Pat and Ginger John's parents and sister flew in, and Melanie took the afternoon train in. Mom was here already when this all happend, and Gary has made the sacrifice of not coming so that he could keep Ethan. (It was very important to me that Ethan be somewhere familiar so that he can stay as stable as possible during this time. Ethan can feel what's going on sometimes, and I don't want him to suffer any more than necessary. He loves being with Papa, so I'm hoping he can just feel like he's having a nice little vacation and be spared some of the intense emotions that can happen during this time.)

Last night Melanie took the night shift at the hospital. John had been awake for over 60 hours, so he finally crashed, but I was lying there wide awake wishing I could get on the computer and send an update. (We were staying in a hotel right next to the hospital and there wasn't internet access.) I finally called Loretta and asked her to read me the comments and put out an update. As we were winding down, Melanie called Loretta and told her that Ellie was wide awake, very calm, and trying to communicate, but no-one could figure out what she wanted. (She is still on the respirator.) Over the phone I tried to give ideas of questions she could ask. Finally, I jumped out of bed and took off for the hospital. I kept praying for wisdom on the way. When I arrived at the bedside, Ellie was awake, and like Melanie said - she was CALM. Melanie showed me the motion that Ellie was making with her hands, and I looked down at Ellie and asked "Do you want your bunny?" and she nodded her head! (Bunny was given to Ellie during her first hospital stay in September - thank you David and Renee - and since then, has been dubbed "Procedure Bunny" because Ellie will not tolerate any procedure, especially radiation, without Bunny.) Since it was 2:00 a.m., the nursing student who was in the room offered to walk with me back to the RMcD House to get Bunny. We delivered Bunny straight into Ellie's hands (of course she was sleeping by then, but I didn't care).

I distinctly remember the moment when I knew that we were going to be o.k. It was on that first morning when I went to the hospital and felt so uncertain. I was trying to do and say the things to help Ellie, but it all felt so wierd. I brought the CD player and Ellie's favorite CD's to help her feel safe. One ear piece was in Ellie's ear, and I leaned my head down to her pillow and put the other one in my ear. The song that was playing was one that I have quoted on this blog before, but I need to share the whole thing with you now, because on this day these words washed over my heart and again, I heard them for Ellie as she lay there with the respirator breathing for her, and I heard them for me:

You Are Good - by Nichole Nordeman

When the sun starts to rise and I open my eyes
You are good. So good.
In the heat of the day with each stone that I lay
You are so good

With every breath I take in
I’ll tell you I’m grateful again
When the moon climbs high
Before each kiss goodnight
You are good

When the road starts to turn
around each bend I’ve learned
You are good. So good.
And whenever somebody’s hand
holds me up Helps me stand,
you are so good

With every breath I take in
I’ll tell you I’m grateful again.
Cause it’s more than enough
just to know I am loved
And you are good.

How can I thank you?
What can I bring?
What can these pour hands
lay at the feet of a king?
So I’ll sing you a love song
It’s all that I have to tell you I’m grateful
for holding my life in your hands

When it’s dark and it’s cold
and I can’t feel my soul
You are so good
When the world has gone gray
and the rain’s here to stay
You are still good

So with every breath I take in
I’ll tell you I’m grateful again
And the storm, may it swell,
even then it is well
And you are good.

How can I thank you?
What can I bring?
What can these pour hands
lay at the feet of a king?
So I’ll sing you this love song
It’s all that I have to tell you I’m grateful
for holding my life in your hands.

You are holding my life in your hands.

As I listened to the music with my head next to Ellie's, I couldn't stop the tears from streaming down my face. When the song was over, I knew that no matter what the happend next, my Saviour was holding Ellie's precious life in His hands and that He is still good, and He is enough for our family... no matter what. Since that moment, my heart has known such peace. Sometimes Ellie seems to be making excellent progress, and other times her temperature starts to rise and her blood pressure dips and the settings on the respirator go up instead of down and we don't know what will happen next. But the "peace that passes all understanding" truly is guarding our hearts and our minds in Christ Jesus. And I know that somewhere deep down in Ellie's heart... in the place that the sedation drugs cannot reach... it is guarding hers as well.