We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Friday, April 06, 2007

Life in the PICU

Well, the one thing that finally stopped my crying last night was being able to sort out my feelings on this blog. Thank you all for your comments and for the encouraging verses that you send. Sometimes the verses and songs that you write are ones that have already popped into our minds - I'd like to think because you are thinking and praying them already for us - and other times they are ones that we haven't thought of yet, and they speak so directly to our hearts. Your words of love and support go directly into our hearts in a way that soothes the wounds that are still so raw.

The word that we have right now on Ellie is that the doctor does not want to plan on extubating her until Monday. (We really trust and appreciate Dr. Howell, the attending physician.) This time will be used to try to figure out why Ellie is unable to breathe properly without the ventilator. I feel both relieved and panicked all at the same time. I dread watching Ellie exhaust herself by breathing so rapidly and having to wear the mask, but I also hate to see her lying there with a tube in her throat, unable to communicate.

The update from Loretta today is this:
β€œHer general state since the re-intubation on Wednesday night has been one best described as 'restless'. She was incredibly restless, fidgety, constantly attempting to 'assist' the doctors by removing the tubes in her mouth and nose. She pulls at the tape on her face and motions toward the tubes and lines below her waist. They have struggled to sedate her from Thursday in the early morning hours to this morning, Friday. It appears they are making some headway with the drug 'mix'. Ellie seems able to shrug her shoulders, turn herself over, pick up arms and legs despite an incredible attempt to sedate. This morning, a half hour into the use of a paralytic she turned her head from side to side and shrugged her shoulders. It is just totally amazing to see. They tried to re-seat her nasoduodenal (n.d.) tube – there have been multiple tries at this. (The n.d. tube will be used to feed her – she is currently on IV nutrition but it is much better for her own digestive system to do the work.) She is fighting the respirator less and seems to be breathing well, which seems to imply there is nothing wrong with her lungs. Her blood pressure is stabilizing, her respirations seem regular and her heart rate and oxygen saturation are good.

We were fearful last night that Ellie was going to go back into hallucinations again but thank God this did not happen. She seems to become incredibly active at night and she is amazingly lucid. She continues to struggle to communicate and in the night we developed a code for her to communicate when she wanted her mouth suctioned. She remembered it and has used it several times now.”

From Sarah again:
I will need to start making visits so that she knows I'm still here. We were hoping that she would be under sedation enough to not miss me... but it is not to be. I have had two long full nights of sleep and some good rest during the day, so I do feel much better. And knowing that your love and prayers continually go before me, makes me know that I am upheld by the Everlasting Arms.

John and Belinda stayed with Ellie through the night. John was able to sleep some at the hospital and now Belinda is home getting some sleep. I will head over there at some point. Thank you for holding John, Belinda and Loretta up in prayer as well.

John has still been so strong. He is in "fight mode" these days - he has not broken down this whole time. I know that his time is coming - because he is human, after all, and this will be his longest stint in the ICU - but for now God has given him extraordinary grace and strength. On this spontaneous trip to NY, John and his dad were able to sit down and make a plan for John's business (he has a lawn/landscape business in Florida). They decided to scale back his accounts to something that Stan can manage in John's absence so that he can stay in New York with Ellie and me. I feel profoundly relieved. I need him here so badly, now more than ever before. And even in this God is providing a way...

Belinda is wonderful to have on board. After months of being able to do nothing but watch from the sidelines, she is raring to go. Her experience as an EMT and her physical strength have been invaluable in knowing how to move Ellie around as well as maniuplating things like tubes and masks (both very difficult things for me). The fact that she is already known and loved by Ellie allows B to help in the calming and talking aspects of her care.

Loretta is ALWAYS ON. I don't know when or how she sleeps, or how she keeps going other than that your prayers must be sustaining her. For this entire past 7 months, Loretta has been the one constant factor in Ellie's care. She keeps all the records, and is the communcation and research hub, but more than that, she provides continuity between care-givers. Because she is on with whoever is actually in the room, and because she always knows my thoughts and wishes in any given situation, she has become the constant thread that is woven throughout the process. By keeping and processing all of the information, and by knowing both John and me the way that she does, not to mention the vast wealth of medical and psychological knowledge that she has, Loretta has been able to see the whole picture in a way that we are often unable to do. Her input and observations are invaluable! I would ask that you keep her in constant prayer in the same way that you do for me. If she breaks down, then my world will unravel... not to mention Ellie's.

We will continue to get word out as things unfold. There are no words that can adequately thank you all for your tender love and faithful prayers for our whole family and "team".


At 4:05 PM, Anonymous Anonymous said...

It is so encouraging to hear about the amazing amount of support you are receiving there. We are praying for them also.

At 5:31 PM, Anonymous Melanie Miller said...

Once again I am in awe of your ability to describe all that is happening and how you are feeling. As someone who has been on the "front-line" with you, I can only say what a testament to your faith you have been, not only through your writings on the blog, but also through what I have seen personally. I have been listening to Twila Paris since you and Ellie and John find such peace with her music. And today I heard her sing "The joy of the Lord is my strength". That is what I see when I am with you -- a joy even in the midst of such heartache. I have always wished for that kind of comfort. I feel like a doubting Thomas, who is so amazed to witness the power of such a faith. Thank you so much for sharing with me and everyone -- it really is inspiring! I love you all, Mel

At 6:02 PM, Anonymous Anonymous said...

Sarah and John,
I wanted you to know that you and Ellie are constantly in my prayers. My heart is there with you and with your precious little girl.
Beth Nichols (Kim's sister-in-law)

At 8:29 PM, Blogger c.g. said...

And they will pray for you with deep affection because of the wonderful grace of God shown through you. 2Cr 9:14

Blest be the tie that binds
Our hearts is Christian love.
The fellowship of kindred minds
Is like to that above.

Before our Father's throne
We pour our ardent prayers
Our fears, our hopes, our aims are one
Our comforts and our cares.

We share each other's woes,
Our mutual burdens bear
And often for each other flows
The sympathizing tear.

Blest be the tie that binds
Our hearts is Christian love.

At 8:37 PM, Anonymous Anonymous said...

Fight on, Sarah! Continue to draw your strength from the Father, and the thousands of prayers that are being said for your family. We're praying for your team, too, and for healing for precious Ellie.

At 9:21 PM, Anonymous oneofhisfriends said...

Dear friends,

Proverbs 16:24 Pleasant words are as an honeycomb, sweet to the soul, and health to the bones.

The patient care in the hospital and through this blog illustrate the power of words. And of the Word. Such encouragement marks one's life.

May God give you even more to say to Ellie.

In the Logos.

At 9:27 PM, Anonymous Anonymous said...

A passage of scripture that has always brought me peace and comfort in the middle of tough times is the whole chapter of Psalm 91. Some one has already written part to you but thought that these verses might encourage you tonite.
v.1 He that dwells in the secret place of the most High shall abide in the shadow of the ALmighty.
v.2 I will say of the Lord, He is my refuge and my fortress: my God in Him will I trust.
v.3 Surely He shall deliver thee from the snare of the fowler and from the noisome pestilence.
v.4 He shall cover thee with His feathers and under His wings shalt thou trust: His truth shall be thy sheild and buckler.
v.5 Thou shalt not be afraid for the terror by night; nor the arrow that flieth by day;
v.6 nor for the pestilence that walketh in darkness; nor for the desruction that wasteth at noonday.
v.7 A thousand shall fall at thy side and ten thousand at thy right hand;but it shall not come nigh thee.
v.14 Because he hath set his love upon me, therefore will I deliver him; I will set him on high, because he has known my name.
v.15 He shall call on me and I will answer him: I will be with him in trouble; I will deliver him and honor him.

Love you and are praying for you.
Love, Vickie

we will be lifting you up in prayer as well. Thank you for all support you give to JOhn and Sarah and for taking time to update us when Sarah could not.
Bless you, Vickie

At 10:03 PM, Blogger dondee said...

Dear John and Sarah (and your "Team," too)

We continue to pray for you here in California. Thank you for your example to us of "Leaning on the Everlasting Arms" of Jesus:

What a fellowship,
What a joy divine,
Leaning on the everlasting arms.
What a blessedness,
What a peace is mine,
Leaning on the everlasting arms.

Leaning, leaning,
Safe and secure from all alarms;
Leaning, leaning,
Leaning on the everlasting arms.

What have I to dread,
What have I to fear,
Leaning on the everlasting arms?
I have blessed peace
With my Lord so near,
Leaning on the everlasting arms!

Isn't it a joy and comfort to know that just as Ellie leans upon Jesus and you two, John and Sarah, as her parents - all of you who love and care for her can also be leaning upon your loving Heavenly Father?!

In His Love, Dee Wilcox


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