One hour

Normally, one single hour would not be very long. Most of them fly by. In the last four days, Abby has not had a single hour without pain. Not one. Every second of all of those hours put together have made the days at home horrific. I have honestly never seen another human in as much pain as my daughter has been in. I woke up literally shaking at the thought of facing another day of trying to hold and comfort her through it. I haven't even run tube feeds for two days because even trickle feeds have been excruciating.

The nurse and practitioner came over today and witnessed Abby's suffering. They still feel it is important to try to get her pain under control before we make decisions about stopping TPN. They want to be certain about what's best for Abby, and not have us make choices because we are terrorized by pain. I think I will eventually appreciate that. Even though we know she can't survive her condition, we would like to see her pain free first.

Today, they doubled the Fentanyl patch, continued the Morphine, Ativan, Grandisol, Zofran, and Neurontin, and for one entire hour, my sweet child did not cry in pain. One hour of relief now feels like a week. I wonder if I've even been breathing, because I suddenly feel oxygen rushing to my tired brain.

She still had pain at bedtime, but settled quicker tonight and has been quiet for a while. We are considering a morphine pump if her pain doesn't stay well controlled.

That was my last sentence last night. She slept pretty good, but has had a rough morning. I am SO thankful for a good nights sleep. I feel better equipped to take care of her today.

As difficult as this week has been, I am still looking for the good I know exists in every situation. There are precious glimpses of Abby everyday. She still gives kisses and answers us. I pray she has peace and feels Gods presence.

*** I can't seem to finish a post, so this is fragmented over 24 hours. She has had a very hard day. We just can't seem to consistently get her pain under control. As grateful as I am for the hours yesterday, today is awful again. We started Pedialyte instead of formula at 5cc/hr. GI is concerned that her bowel could die without any movement, but feeding through severely impaired intestines/ ileus is extremely painful. The small glimpse of a pain free Abby last night makes Jeff and I really want to see her like that. PLEASE pray that she would have relief from this pain. ***

Enough

Being home is wonderful, as I knew it would be, and unbelievably sad. I knew it would be.

There are so many great things about home. My instant coffee machine and super hot showers. My husband and children, oops, I think they should have come before coffee. I just love being here. The hospital has its merit too. Nurses to do meds and IVs. Doctors moments away for concerns. It's scary being on my own, and very, very busy.

Treatment in the hospital is so different from home. Here, she is in so much more pain because she wants to be up in her chair. There she lays pretty still and it seems more manageable. Knowing that she's only getting sicker makes every cry and pain med dose painful for me. I feel so guilty for putting her through any more pain, but it's just not time to stop.

How does one quantify the quality of of another's life? It is a question that fills my mind every second of the day. Everyone has an opinion about quality of life. I mean every. one. For the nurse our last three days in the hospital, Abby's weak little smile constituted a quality life. The social worker sees Abby as suffering, and although she doesn't offer advice, she is very supportive. The nurse thinks we can manage the pain and have time with her.

This an extremely confusing time. I knew it wouldn't be easy, but I didn't think it would be this hard. Knowing that she can not survive makes every moment of pain agony, it also makes every moment she's comfortable and like herself so sweet.

I don't want to have to decide. I want to be left without a choice. I want God to intervene in such a way that we are certain it is unreasonable to continue. Even so sick, Abby is strong. She is more tired than I have ever seen her, she is in pain, but she's started to gain weight from the TPN.

Emily has a peds appointment today and I'm going to discuss these Abby issues with her Dr. then. We really need a lot of prayer for wisdom, and a clear plan. We need to know exactly when enough is enough.


- Posted using BlogPress from my iPad

Panic

This is going to sound stupid, so bear with me.

I realized today that all of that beautiful love and sympathy scares me to death. I'm trying to be so practical and cognitive about this decision, but when I hear someone else crying, it squeezes my heart. Knowing that anyone who ever met that precious girl grieves too is so sad for me. I'm so very sorry that we are all going to miss that sweet face.

I'm trying hard to walk through losing my daughter without crying all day. I know there will be a time and place for grieving her, and maybe for the first time in her life, I refuse to hold and mourn her at the same time. I don't want her to feel that from me. I want her to feel loved, and supported.

I can't let myself bury my alive child. She is here, soft and warm. Her sweet little fingers opened on mine and she is there with me. I don't know how to describe how alive she feels to me when I know how sick she is.

Hospice is working closely with us, and they have been wonderful. They are arranging for a photographer to take some pictures next week. They will also bring out hand molds and canvas for hand/foot prints. She brought a lot of books today to read to Abby and my other girls. She also brought one for me. I'm going to try to look through it tonight.

We talked with Hannah, Emily, and Sarah yesterday. I wish I didn't need to do it. As I said, the grief of others is harder than my own right now. Seeing my girls hurt breaks my heart. As I suspected, it was very hard on Sarah. Hannah was upset, but she understood. Sarah really cried. I just kept telling her that we still have time with her.

The fentanyl patch is working ok for Abby. She woke up more yesterday and is definitely more interactive, but she still has pain. She got morphine last night to try to get comfortable, but was still restless. The doctors think she could still have a few weeks to a few months. I asked the GI doctor (who was awesome to us) one more time...you're sure? You really don't think she will ever get better? Did we make the right decision? He said she has just steadily gotten worse, and he had an ileus before himself and it is very painful. He thought we should bring her home on TPN, and stop when we know the time is right.

I had to ask, just one more time.

Tomorrow we will leave here, knowing that I will never bring her back again. There is an actual ache in my chest when I think of it. I know it's the right thing for her, but knowing that I could bring her back and they would do what they could, this still can't be fixed. There is no reason to bring her here again.

Jeff and I are trying to take this one day at a time without panicking over what the future holds. We just pray for all of our girls (by the way, Emily looked concerning yesterday, I'm sure a doctors appointment is in her near future.) as we walk this last road with Abigail.

Our decision

The last few days have been a whirlwind of meetings, social workers and hard decisions. We have been very supported and loved. I can't say how much I appreciate all the love and prayers sent our way.

Abby is waking more today, but seems to be in more pain. We are going to try the fentanyl patch to see if it offers more consistent relief. She can also go up significantly on zofran and ativan for nausea.

Jeff and I have decided to bring her home Monday on TPN. If we are able to get her pain under control and she can have some awake time each day when she feels good, then we will leave her like that for a while. If she can have some quality time with her sisters and family, we want the opportunity to offer her that. If we are able to control her pain and she doesn't develop respiratory issues, she could potentially have a few months, although that is unlikely. Eventually, she will develop breathing issues from the amount of pain medicine she needs.

If we get her home and find that she is sedated or in pain all the time, we will stop TPN and spend our last few days holding her. There were a lot of "ifs" in that, but that is where we leave it in God's hands. He will decide which "if" is ours.

Her GI system is not functioning, so we can not use it for nutrition. She will never be able to support her own life and is suffering in pain. We are running feeds at 5 simply to keep the bowel from dying--which is very painful.

We will probably be evaluating her on a daily basis. Based on how she's been here, our goal is a few weeks at home with her before it becomes simply unfair to continue to artificially support her. We want time with her, and a chance to say good bye, but not at the expense of her comfort.

We feel confidant that we will know when to stop. We know that God will give us the peace we will need in that moment.

We know that this is the right decision for our family and we are so thankful for all of you praying us through this time.

What does not last will be dressed with what lasts forever. What dies will be dressed with what does not die. Then what is written will come true. It says, "Death has been swallowed up. It has lost the battle."—1 Corinthians 15:54