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.


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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

Abigail Grace

I guess I should write about how difficult this is, but you all know how hard this must be. Today, I think just talk.

I keep thinking of Abby as an infant and toddler. She was so fussy and difficult to soothe. I prayed over and over for God to take CP from her, or to take her so she wouldn't live such a hard life. Obviously He didn't, and Abby became strong. She is so strong that it's hard to imagine that she could ever die. Even now, her sats are good, she's breathing fine. I can't believe what's happening.

When she was little, I stared at her tiny, perfect face for hours. She was so pretty. I rocked her and tried to understand how she could be so absolutely perfect and have something so wrong inside her little baby brain. I feel that way now. She is so Abby, how can I not help her more? Is there really nothing else to do, except decide how to say good bye?

I think on this blog, I've focused on our struggles with raising children with disabilities, and about my faith, but I wonder if I've spent enough time on how incredibly hugely I love her. Have I said how thankful I am that she's mine, exactly the way she is? From the very first second I learned she was there, snuggled up with Emily on ultrasound I was thrilled. Little twin "b", my unexpected blessing. When I found out they were both girls, I'm not gonna lie, I was worried the way all moms worry about daughters, but still so excited. As hard as it was to accept her disability, I loved her instantly and completely.

When she wasn't fussy, she was the sweetest baby. She learned early to give big sloppy open-mouthed kisses. We all still try to get the most kisses each day. Sadly, Jeff usually wins :/. She loves her daddy. Her maw maw was always her favorite too. She wanted her over me the first 5 years. Lately she's been a mamas girl.

She is funny too. She has the BEST well placed "ya!". It always comes at just the right moment in a conversation to make everyone laugh.

She has a smile that lights entire rooms. She gives it generously and without reservation. Everyone she smiles at gets all of Abby. There is no caution or concern, just her whole self in a beautiful whole face smile. I love that about her.




I could go on for a year about her- and likely will, but for right this minute I am going to try to win most Abby kisses for the day.


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Update

Quick update:

~Abby's upper GI went well today. Thanks for praying for her. The results were not good. Her stomach did not empty at all. Where it is supposed to empty is compressed by the spine. When we turned her on her left side, it emptied some, but that was it. Her anatomy has the first small bowel looping back over Itself, and back over the spine. The rest of the small bowel is entirely on the right side again. She had some dilation in that area indicting the positional blockage we suspected. There were intermittent areas of ileus throughout the large colon. All of it indicates further failure of her gastrointestinal system. Obviously not what we hoped to hear.

~Her spine is probably unrepairable. Even if she was healthy, the curve is too severe.

~Jeff will come in the morning to discuss all of this with her doctors and we will make some decisions. We were presented with end of life options today. I'm still praying that God will intervene and take this choice out of our hands.

~

Morning

The whole earth is filled with awe at your wonders;
where morning dawns, where evening fades,
you call forth songs of joy. Psalm 65:8 (niv)

I'm not sure if joy in the morning is exactly true, but a calm, sleeping Abby is. She is still very sick, but resting. Even today, I love that I can go to bed filled with so many emotions, and wake to a new day that has possibility. As long as Abby is still here, we will still hope for her.




She is swelling a little in her face, tummy, and feet. It's not terrible, but the doctor thinks it may be early third spacing, which is just fluid in the tissue, but not what we want to see.

I thought we were done with surgeons last night, but this morning we've seen many more. Doctors are pack animals. They come in in groups, followed by more. They stop, listen, watch, and leave. I still don't understand what they're thinking.

Here's what I do know. So far, all cultures are negative. She is off isolation. Joy!

She is sleeping almost constantly. She wakes and occasionally answers us. Usually, she doesn't respond. She may have simply been exhausted from the last week. She could be drugged or she could be simply checking out. Maybe a little of them all.

They are running her feeds at 5cc/hr. Enough to remind the belly of its job, but not enough to contribute to blockage issues should they exist. She's been retching most of today. Even so out of it, that belly is trouble :/

Today we saw many residents, several surgeons, GI, the nutritionist, peds, and ortho. The general consensus is her spine is the likely culprit here, along with belly pain. Two very difficult types of pain to treat. That led to many more questions. How much do we sedate her? Do we continue g-tube feeds? Should we do straight TPN?

All roads lead to the same place, so to me, the question seems to be, how do we want her to get there? We just don't know, but continue to pray that we wouldn't have to decide.

She will have an upper GI series tomorrow morning with small bowel follow through to see how obstructed het bowel is from the spine. Ortho feels certain that she wouldn't survive a surgery to correct it, but we'll get the final word on that from the head spine doc tomorrow. This is her curve.



Her tail bone is sticking out about midway in the picture and curves up in toward the baclofen pump. Her tail bone and 3 vertebra are actually horizontal. No wonder the little sweetie hurts. When we saw this film, the nurses, Jeff and I just cringed. Our poor baby.
<-------







This is the hardest thing we've ever been through, but Jeff and I continue to have peace about it. Now that Abby is calm, we are calmer. We are just taking one day at a time, and often one minute at a time. Of the 108 days she's been in the hospital since this began, this one is the hardest. Everyone is sad. Turning a corner from treatment to straight palliative care is never easy. We want to be kind to our daughter, and now we have to pray about what that looks like to Abby.

Please remember her tomorrow as she has more testing, and thank God for the 30 hours of straight sleep she's had.


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So Bad

This week has been so bad for Abby. Just when I think it can't get any worse, it does. She has many issues contributing to her overall appearance. Last week, the social worker said that if we get her pain and nausea under control, she may have some quality time left. I hope that is still true.

We have been working (unsuccessfully) at getting her pain under control. She alternates periods of screaming and complete lethargy. She started running a fever over the weekend and draining the most awful green stuff I've ever seen from the g-tube. It has been heart wrenching to see her go through this. We all still believe her spine is compressing the belly, causing pain.

Last night, she was eerily quiet, and so pale--her lips were even white. I got scared and called the on call nurse. We decided to try to get through the night, and figure it out today. That is why I'm writing from a hospital room.

Abby's platelets dropped significantly this week (almost in half), which could mean she's beginning an infection. She was also dehydrated, which I knew because of her sticky mouth and cracked lips. All of that with the fevers, green belly, and pain, prompted the pediatrician to send her here to be evaluated. So, line cultures drawn, urine culturing, c-diff pending (I hate that one, because she's on isolation until its negative) :(, chest and tummy x-rays, a surgical consult done and ruled out- Thank. You. God., ID consulted-we'll wait on antibiotics to see if something comes back positive, and a consult with the palliative care team tomorrow for pain management. Is that enough?

Overwhelmed doesn't touch what I'm feeling. She is so much care, and she's not even comfortable most of the time. I'm praying they fix that tomorrow.

I'm exhausted and can't think to write anymore. I'll update tomorrow after I know more.




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Can't sleep

I'm lying awake wondering if today will be a turning point for Abby.

I am working on a Sarah post, which I really want to get to, but there's so much going on. Her birthday was yesterday, and we celebrated, but it wasn't the same. Abby has been in a lot of pain this week. Managing it with what I have available has been impossible. I was so distracted, I burned/caught on fire, Sarah's dinner, the awful puppy grabbed almost a whole pack of bacon off the counter and ate it raw :(, and I messed up the cake. In the end it all turned out fine, but what a temporary mess it was!




KidsPath came out Tuesday, and I made it through two hours of talking about all of it. Advanced directives, end of life care, and pain management. They were wonderful, but it still doesn't seem real. I feel like my head is doing what needs to be done, but the rest of me still hopes for my child the same way I have her whole life. In a way, that's good because she's here. The last thing I want is for people to begin burying her. She's here and she's still herself, just sick.

The team met about her and spoke with her pediatrician yesterday. They all decided it was best to start some Morphine to get her pain under control, and then she'll switch to a Fentanyl patch. We started Ativan for anxiety, sleep, and they said it can help with nausea too. The nurse comes this morning for the first Morphine dose. The only reason I'm not upset about all of this is that she hurts. She is in pain and I can't stand that.

They ordered a hospital bed with a pressure mattress. I think it will help--at least I hope it will. It's returnable, so that's okay. I'm following their lead in all of this. They've done it all before and I am learning as I go.

I'm wondering if today turns her in a way she doesn't turn back from. Does starting heavy pain meds signal the beginning of the end, or does it give her little body enough relief to actually heal some? Most of the time I want it to be over for her. I want her suffering to end, but over is over. No take backs. For me, I want her here. For her, I dream of heaven.

I was looking through pictures yesterday thinking about what a cute kid she was/is. I have to scan some pictures this week. We used to fill metal bowls with all sorts of sensory items, like bead strings, crinkle paper, and small toys. We would put them on her walker tray where she would systematically work each one out until she managed to get it all on the floor. She'd pull most out with her teeth, and grin with it hanging out of her mouth. We would pick them all back up, and start again. She loved it! So did I.





Time to move through this day, and let what will be, be. Please pray for us to quickly find the right med combo for her. The nurse said when they first begin the meds they often sleep a few days because she will finally have some relief, then they adjust and wake more. I need to remember that and not panic the next few days!

Shift, NOT quit

As I've mentioned lately, Abby hasn't been doing well. Although yesterday was pretty good, all things considered.

Last week, I had a long talk with the pediatrician about what to do next. Jeff and I have had several conversations lately,and I wanted to see what the doctor thought. She agreed that Abby is suffering, and not likely to recover at this point. Saying that is NOT giving up on her, it is only shifting our thinking.

Over the last year, there have been many things we wouldn't do or try because most meds and treatments impact the belly. We haven't wanted to slow it down more than it already was. Now, with her spine curving so severely, she is in pain. Her nausea is constant too. It could be pain making it worse, or she could be simply tired. Oh, how I wish she could tell me.

The Dr. suggested we contact Hospice. Hospice is for people who have less than six months left, and we can't know how long Abby has, but her doctor thought they could advise us on comfort measures. Dr. Lowe spoke with them for us, and they contacted me on Friday. They offer many different services, not all of which include hospice services.

Abby will enroll in kidspath, which is a program run by hospice for kids not likely to make it to adulthood. I tried to get her enrolled in it in December, but there were no spaces available. The doctor helped with that, I think. Anyway, they will help advise us as we try to make her comfortable. We will also write a DNR, so if she goes at home, we can comfort and hold her, rather than pump on her chest. I want to make that decision while she's okay. I don't think I'll have the strength to do it in the moment. I want peace for her. I want to care for her in the end. I've known I would want it to be that way for a long time, but I didn't know how to ask for it. I think I'll feel better that I did.

As I write it sounds to me like we are giving up, but we're not. We will continue with all of her care. We will feed, do TPN, antibiotics, and anything else she needs. We just won't do extraordinary things to keep her alive if it's her time to go. We will make her as comfortable as we can, even if it's not best for the tummy. We will also continue to treat her condition as well and as aggressively as possible, without being invasive.

Jeff and I are both at peace with it. We believe we are doing the best we can for our daughter. God will decide the rest.

I also had to write an IEP for her last week. It was awful to speak to the hospice coordinator before a meeting that planned for a year from now. But I did it. Exactly how I would have if she was fine. That's what I mean by shifting, not quitting. We are walking with one foot on both roads.

My friend, who lost her sweet boy last year, reminded me to get lots of kisses and just enjoy her. That's what I am doing. Loving on her, and still hoping that she will do better. She is still our Abby, and we love her very, very much.

Miss Abigail

My sweet Abby certainly keeps us on our toes. The same kid who has trouble keeping her head up most of the time, scooted to the edge of her bed last night and fell out. Her left leg was tangled in the covers keeping it up while the rest of her went down. That was a great big stretch for legs that don't stretch well. She also hit her head on the floor.

So off to the ER at 10 pm. The antibiotic she's on drops her platelets, so we were concerned that a fall could cause a bleed, and she was having periods of lethargy and of course nausea, so we couldn't be sure what was up. She had a head CT, hip, pelvis, neck x-rays and eventually a neck CT for inconclusive X-rays.

Thankfully, no breaks, just some aches. We got home at 5am. I want to go, really? Hasn't she had enough? Does she really need to fall out of the bed? But I'm so very, very thankful that she's okay, I can not bring myself to question it.

She's been tired today, but otherwise fine with Motrin.

Lots of other stuff going on with her that I want to write about tomorrow. I'm so glad I started writing this stuff down. Not only does it help me to work through it all, it is really a journal. I wish I would have had it when my kids were little. Lots of people use their blogs as a scrapbook. I can never manage to get pictures loaded, but its still comforting. Reading back over the last 16 months reminds me of all Abby has endured. She is one tough cookie!

Trust

May the God who gives hope fill you with great joy. May you have perfect peace as you trust in him. May the power of the Holy Spirit fill you with hope.
~Romans 15:13 (nirv)

One of the earliest and hardest things I've had to learn since Emily and Abby were born was what God was to me in the midst of pain. My babies were hurt. Their brains were damaged, and God could merely think the thought and they would be healed. He could fix this and chose not to. How could I trust him, surrender to His will, His plan, when it seemed so wrong?

How was I supposed to move through this pain, to love God and live the life He set before me well?

I believe the last 14 years have prepared me for this moment that I am in now. The nights I cried, prayed, begged, and grieved. The days that I laughed, rejoiced, celebrated, and loved more than I thought I could. All of those moments brought me into relationship with God. I learned to be real in my faith and with what I was going through. That was how I could grow and move, rather than be still.

Learning to trust God and surrender while still making so many choices is hard. Really hard. I have to decide what to do with Abby. I make dozens of choices every day. There are little decisions and now, very big ones. And yet God is in control. How does that work?

It works by staying close to Him. Reading His words. Hearing His voice. Seeking His face.

Honestly, I've known that, practically, for a long time. But I didn't feel any help with actually moving through the hard times. I still felt alone with all of the responsibility. I knew the "church words" for trust, but struggled with experiencing it.

I think the one (and possibly most important) word often left off that equation is surrender. I can not control the situation and trust God with it at the same time. Maybe for the first time, I'm in a place where I do not want to decide.

So, I pray. I actually listen to the words in the bible. I stop, and wait. And there in that place, when the words in my head are His; where what is happening is not what I want to happen, is peace.

I am sad, and scared, but I have peace. Peace because I trust. I trust we will have what we need in the moment we need it. I trust that if Abby goes to heaven, she will finally be healthy and whole. I know she won't suffer anymore. I have peace in that. I trust that as long as she is here with me--if that is months or years--God is there too.

Goals

Anyone with a special needs child understands that their care is entirely goal oriented. From the very first moment goals are set for survival. They wean off the vent, oxygen, begin feeds, and the all important weight goal.

Every single meeting or evaluation requires me to "state my goals for my child". When they were two, I remember being in a meeting and being asked what my goals were for them as adults. Really? My 2 year old daughters with CP? The children I still cry over every day? I don't know how I see them--I didn't see them like this at two, but I still managed to come up with a meaningless adulthood goal.

Goals met or not met drive education, health care, therapies... Every aspect of life is based on achievement. CP itself is diagnosed by lack of skill development. Goals not met. Wild and unreasonable excitement when they are met, or even surpassed.

The last year and a half for Abigail has been focused on feed rate goals. Her ability to maintain her own life has driven all of our treatment for her. We left the hospital this time without any goals. None. They didn't ask me to work on rate. 40 an hour for a few hours a day provides some protection for the liver while on TPN. They didn't ask me to try to decrease IV fluids. There was no timeline on TPN. They gave us what they could to make her comfortable and we brought her home.

Suddenly we live in a goal free world, and I am lost. Her comfort is our only concern. Her belly is functioning even less. When the nurse came tonight, her heart rate was 48, but that's ok for her now. Words like palliative care are popping up. One side of my brain completely understands what is happening. The other side says that side one is exaggerating, and Abby is going to be fine. It depends on the moment which side I believe.

There has been a definite, palpable shift in Abigail and the way we look at her. I thought starting TPN again would be like last year. I expected it to quickly stabilize her and then we would decide what to do. That is not happening. Everyday she seems just a little weaker.

I still believe she can turn around. I wake up every morning and don't even open my eyes without praying she would feel good for a single day. I just keep thinking that the right formula, the right med combo, the right words to pray, the right something will be what finally makes a difference.

Goals. They've been our friend and enemy throughout this journey. I'm sure that I'll still manage to find one somewhere. I didn't realize how comforted I've been by knowing where we at least hoped to go.

I have two more posts this week about where we are with Abby, and next week is Sarah's 12th birthday and the story of what a miracle she is.


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Home

Abby and I came home Friday afternoon. I'm not sure how she felt, but I was exhausted. Her line grew coag negative staph. It's a fairly common line infection, especially in the hospital. The medicine they were treating her with (zyvox) was one they didn't want to send her home on, but the bug was resistant to everything else, except vancomycin and zyvox.

Zyvox suppresses bone marrow and knocks out platelets. Abby had a pretty significant drop in her platelet count before we left yesterday, so they'll draw again Monday, and every three days to be sure she doesn't need a transfusion. Besides that, she should do okay. It can, and seems to be raising her heart rate, which isn't a bad thing for her. It was 82 today, which is pretty good, considering she hangs in the 40s lately.

I'm not sure how she is doing, although in a few words, not well. I'll write more about that later. We are all heavy hearted as we hold our sweet girl through it all. Please keep her in your prayers.



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