I'm pretty sure I'm a broken record by now. Each week is the same roller coaster it always is. Saturday was a pretty good day. Sunday, in the top five awful pain days. She is simply sick and every day all of those around her ache through it with her. We love her so much, but hate how bad she feels.
Her Baclofen pump is being refilled Thursday, so hopefully she feels alright that day. I would love to take her somewhere else that day. I don't really want the doctor to be the last place we take her.
Tomorrow we are doing family pictures at our house and I am praying for just one Abby smile. Just one more. One more time I'd like to get that sweet grin on film. They are rare now. She smiles, but not often.
I can't imagine there is ever a good way to lose a child, but this seems especially bad. She really needs peace now. No more days with pain.
There isn't much to say that I haven't said before. Every word before now is still true. It's just very, very sad.
Please keep praying with us, and pray especially at 10:30 tomorrow that Abby would feel well enough for pictures.
Monday, August 13, 2012
Saturday, August 11, 2012
Dream
I think everyone knew the Morphine pump would change things and it has.
Abby is definitely tired and more drugged. She does have better, much more consistent pain control. She still has pain, but it's not the same. Yesterday, they upped her overall dose to try to get it completely under control.
It is very hard to see her at this stage because we know her days with us are few now. Most of the time, I feel very peaceful about that. Thursday, Jeff and I looked at each other and knew the time stop TPN was near. It's still going for now, but her body is slowing down on it's own. Some mornings her breathing is different, then it evens out. She wakes up with a rattle in her chest. Sometimes her feet and face swell a little. The tummy sounds continue to be intermittent.
Everyone told us we would know when it was time. That didn't seem possible until we knew.
Thursday night, after the conversation about stopping I was exhausted. I fell asleep fast and hard. I had a dream that Abby was flying over lakes and creeks, and gorgeous green banks and landscapes. Everything was so beautiful. I was completely taken in by the joy in the experience. Then it suddenly hit me that she would hate that. She doesn't even like the tram into Disney. There is no way she would like to fly fast like that. Then I was sort of in her and could feel what she was feeling. I realized she could see. She was taking in all of the beautiful sights for the first time and she wasn't afraid. There was such peace in her that I instantly felt calm. There aren't human words for the overwhelming goodness of that feeling. She was so free and happy that I woke with tears in my eyes.
Of course I went to check on her and she was still okay, but I couldn't sleep after that. I kept thinking about how beautiful that experience was going to be for her.
Then I began thinking of the practical, physical details of death that had to be dealt with. Friends, there are many. One in particular is the Baclofen pump. Abby's alarm date on that is August 26th. Our appointment to fill it is August 23. She is very sick and may be too sick to go to the doctor then. We are trying to move her appointment up to early next week, but they only fill pumps on Thursday. That would mean keeping the TPN going until after that. Even if we stopped now, she could hang on until after the alarm date. That isn't a scenario I want to explore. We are still working on an early week appointment.
Then Hannah starts classes the 20th. I feel so bad that she will start school and then have to deal with the loss of her sister, then go back. I keep saying that I trusted God with the timing, and I have to trust Him with Hannah too. We talked to her about it to try to prepare her for a difficult situation, but I don't know if anyone can prepare for this.
The social worker encouraged us to have Hannah and Sarah write letters or select special items to put in with Abby after she passes. Both of them were in tears over the thought. We told them they didn't have to, but they could if they wanted. Their tears, above all else, breaks my heart. I shared my dream with them and spoke again about Heaven, but as Sarah aptly said "our house will be quiet without Abby, and I don't like that much quiet".
It's a very busy, difficult time here. But then there is peace too. Please keep praying for God's perfect timing and all of the details to work out.
- Posted using BlogPress from my iPad
Abby is definitely tired and more drugged. She does have better, much more consistent pain control. She still has pain, but it's not the same. Yesterday, they upped her overall dose to try to get it completely under control.
It is very hard to see her at this stage because we know her days with us are few now. Most of the time, I feel very peaceful about that. Thursday, Jeff and I looked at each other and knew the time stop TPN was near. It's still going for now, but her body is slowing down on it's own. Some mornings her breathing is different, then it evens out. She wakes up with a rattle in her chest. Sometimes her feet and face swell a little. The tummy sounds continue to be intermittent.
Everyone told us we would know when it was time. That didn't seem possible until we knew.
Thursday night, after the conversation about stopping I was exhausted. I fell asleep fast and hard. I had a dream that Abby was flying over lakes and creeks, and gorgeous green banks and landscapes. Everything was so beautiful. I was completely taken in by the joy in the experience. Then it suddenly hit me that she would hate that. She doesn't even like the tram into Disney. There is no way she would like to fly fast like that. Then I was sort of in her and could feel what she was feeling. I realized she could see. She was taking in all of the beautiful sights for the first time and she wasn't afraid. There was such peace in her that I instantly felt calm. There aren't human words for the overwhelming goodness of that feeling. She was so free and happy that I woke with tears in my eyes.
Of course I went to check on her and she was still okay, but I couldn't sleep after that. I kept thinking about how beautiful that experience was going to be for her.
Then I began thinking of the practical, physical details of death that had to be dealt with. Friends, there are many. One in particular is the Baclofen pump. Abby's alarm date on that is August 26th. Our appointment to fill it is August 23. She is very sick and may be too sick to go to the doctor then. We are trying to move her appointment up to early next week, but they only fill pumps on Thursday. That would mean keeping the TPN going until after that. Even if we stopped now, she could hang on until after the alarm date. That isn't a scenario I want to explore. We are still working on an early week appointment.
Then Hannah starts classes the 20th. I feel so bad that she will start school and then have to deal with the loss of her sister, then go back. I keep saying that I trusted God with the timing, and I have to trust Him with Hannah too. We talked to her about it to try to prepare her for a difficult situation, but I don't know if anyone can prepare for this.
The social worker encouraged us to have Hannah and Sarah write letters or select special items to put in with Abby after she passes. Both of them were in tears over the thought. We told them they didn't have to, but they could if they wanted. Their tears, above all else, breaks my heart. I shared my dream with them and spoke again about Heaven, but as Sarah aptly said "our house will be quiet without Abby, and I don't like that much quiet".
It's a very busy, difficult time here. But then there is peace too. Please keep praying for God's perfect timing and all of the details to work out.
- Posted using BlogPress from my iPad
Wednesday, August 8, 2012
Quiet, and not so quiet
I wrote a post two days ago that seems to be lost in the blogosphere. It's unfortunately gone, so this one has to be a condensed version, adding the last two days. :/
Quiet has described Abby's tummy for two days. All the normal gurgles and plops that a belly makes were gone for 9 hours Monday. It was awful to hear the silence in that tummy. We didn't know what was happening, and our (kidspath, pediatrician, and us) thought the ileus was progressing and it was the end of the road. All day Monday, I walked around with such heaviness in my chest. She played and didn't look too bad, which is typical Abby. She's not going to give up easily.
Later that afternoon, her tummy gurgled a little again, and with its return came awful pain and nausea. Yesterday, she had intermittent bowel sounds, but a lot of pain. Too much pain. We made the decision to begin a continuous morphine pump today. The TPN will go for now, but we are nearing the end of our list of options. Her poor little tummy is so much sicker than her spirit. She wants to keep going. I feel so grateful that through all of it, she has remained herself. We didn't lose that part of her that made her who she was. Strong, smiley, feisty Abby Grace.
That may change today with continuous morphine around the clock. I'm preparing for that, but knowing Abby, I doubt it will bring her down too far.
As usual, I fell asleep last night questioning our decision to start the pump. This morning she woke up not so quiet, but screaming in pain. It took 40 minutes and every drug we have to get it under control. That answered any question I might have about what to do.
We don't know exactly what is going on inside her belly, but it's not good. The pediatrician called GI yesterday, but he just wanted to admit her to the hospital. We aren't doing that for any reason anymore, so we are just guessing that Abby is having intermittent, complete ileus. This is not the way we hoped it would go.
When we left the hospital after that BIG decision to stop TPN at some point, we felt confident that we were making the right choice for her. At home, kidspath thought we could control her pain and then see what she looked like.
Quite a bit of time has gone by, and she is still in daily pain. Kidspath sent Abby's case to pain doctors across the country, and what they learned was that this type of pain is extremely difficult to control. Although this downward spiral Abby is on is rare, it's not unheard of. There are very few things we can do for her, and frustratingly, it seems that even comfort is included in that list.
So that brings me to another day, I am praying for comfort, and good quiet for my girl.
As far as the other girls go, they can't wait to go back to school. It's very difficult for them to watch their sister in pain. Emily is doing much better, but she worries about Abby. Hannah and Sarah are bored because we can't leave the house much. They understand, but again, school is looking good to them.
This is one of those days I just don't want to do, but I will. I do have peace with where we are, and for that I am grateful.
- Posted using BlogPress from my iPad
Quiet has described Abby's tummy for two days. All the normal gurgles and plops that a belly makes were gone for 9 hours Monday. It was awful to hear the silence in that tummy. We didn't know what was happening, and our (kidspath, pediatrician, and us) thought the ileus was progressing and it was the end of the road. All day Monday, I walked around with such heaviness in my chest. She played and didn't look too bad, which is typical Abby. She's not going to give up easily.
Later that afternoon, her tummy gurgled a little again, and with its return came awful pain and nausea. Yesterday, she had intermittent bowel sounds, but a lot of pain. Too much pain. We made the decision to begin a continuous morphine pump today. The TPN will go for now, but we are nearing the end of our list of options. Her poor little tummy is so much sicker than her spirit. She wants to keep going. I feel so grateful that through all of it, she has remained herself. We didn't lose that part of her that made her who she was. Strong, smiley, feisty Abby Grace.
That may change today with continuous morphine around the clock. I'm preparing for that, but knowing Abby, I doubt it will bring her down too far.
As usual, I fell asleep last night questioning our decision to start the pump. This morning she woke up not so quiet, but screaming in pain. It took 40 minutes and every drug we have to get it under control. That answered any question I might have about what to do.
We don't know exactly what is going on inside her belly, but it's not good. The pediatrician called GI yesterday, but he just wanted to admit her to the hospital. We aren't doing that for any reason anymore, so we are just guessing that Abby is having intermittent, complete ileus. This is not the way we hoped it would go.
When we left the hospital after that BIG decision to stop TPN at some point, we felt confident that we were making the right choice for her. At home, kidspath thought we could control her pain and then see what she looked like.
Quite a bit of time has gone by, and she is still in daily pain. Kidspath sent Abby's case to pain doctors across the country, and what they learned was that this type of pain is extremely difficult to control. Although this downward spiral Abby is on is rare, it's not unheard of. There are very few things we can do for her, and frustratingly, it seems that even comfort is included in that list.
So that brings me to another day, I am praying for comfort, and good quiet for my girl.
As far as the other girls go, they can't wait to go back to school. It's very difficult for them to watch their sister in pain. Emily is doing much better, but she worries about Abby. Hannah and Sarah are bored because we can't leave the house much. They understand, but again, school is looking good to them.
This is one of those days I just don't want to do, but I will. I do have peace with where we are, and for that I am grateful.
- Posted using BlogPress from my iPad
Thursday, August 2, 2012
Funerals
I may have mentioned in previous posts that we are trying to take care of the details of our inevitable situation now. We want to focus solely on Abby, and having those things hanging out there bothers me. I want to be finished with all of it. I'm not sure I can do this after she's gone. Right now, I make an incredibly difficult phone call, and then go hold her hand. I walk quickly by her and ruffle her hair. Little things that remind me I don't have to miss her yet.
I never went to a funeral as an adult until my friends baby died. Then a NICU baby in the room with my girls died. Of course, no one likes going to funerals. I might appreciate it less than others. Planning my own child's is more than surreal. It doesn't even seem possible.
Jeff's mom went to the mountains last week to mark the spot for the funeral home in the family cemetery. Its beautiful. She took pictures for us, and as sad as it is, we have some comfort in knowing she will be in such a beautiful place.
The little flag in the center marks her spot. Emily's is right next to it.
Looking straight up to the top of the hill.
The view looking down the hill from their place.
I love this. This is where my babies will be one day. This is where Jeff and I, Hannah, Sarah and the families they will have, will visit. This what we will see from a little mountain cemetery.
Again, comforting. It feels solid. That mountain has been there for thousands of years and will continue to be there.
I finally got up the nerve to call the funeral home here in town. Jeff and I will meet
there next week to choose a casket and finalize arrangements for transporting her (the mountains are 3 1/2 hours from us). This is very, very hard but the more we get done, the easier it is. I feel like making less emotional decisions helps me feel like I am doing what I hope to for her.
Because it's a little far from us, we will bury her quickly and privately when the time comes. There will definitely be a memorial service that I hope all of our family and friends will join us for.
Abby is doing relatively well, but as her kidspath nurse said this week, she is the definition of medically fragile. Every minute is so different. She requires intense care. Even home health nurses won't do most of it. They assist, but because almost all of her meds are IV now, and not compatible with TPN, they don't want to take chances on messing it up. That means I give almost everything. It's not very hard, but I am tired. She is fighting, so we are too. She is determined to really live in the time that she has. I am learning to do that right along side her.
We know that each day something could happen that would change everything. She can not recover from this. Having nonfunctional intestines is not compatible with life, and one day she will get sick. She's certainly hung on longer than the doctors thought she could, but as I've said many times, God has numbered her days, and He will decide which one of those is the day for a funeral.
I never went to a funeral as an adult until my friends baby died. Then a NICU baby in the room with my girls died. Of course, no one likes going to funerals. I might appreciate it less than others. Planning my own child's is more than surreal. It doesn't even seem possible.
Jeff's mom went to the mountains last week to mark the spot for the funeral home in the family cemetery. Its beautiful. She took pictures for us, and as sad as it is, we have some comfort in knowing she will be in such a beautiful place.
The little flag in the center marks her spot. Emily's is right next to it.
Looking straight up to the top of the hill.
The view looking down the hill from their place.
I love this. This is where my babies will be one day. This is where Jeff and I, Hannah, Sarah and the families they will have, will visit. This what we will see from a little mountain cemetery.
Again, comforting. It feels solid. That mountain has been there for thousands of years and will continue to be there.
I finally got up the nerve to call the funeral home here in town. Jeff and I will meet
there next week to choose a casket and finalize arrangements for transporting her (the mountains are 3 1/2 hours from us). This is very, very hard but the more we get done, the easier it is. I feel like making less emotional decisions helps me feel like I am doing what I hope to for her.
Because it's a little far from us, we will bury her quickly and privately when the time comes. There will definitely be a memorial service that I hope all of our family and friends will join us for.
Abby is doing relatively well, but as her kidspath nurse said this week, she is the definition of medically fragile. Every minute is so different. She requires intense care. Even home health nurses won't do most of it. They assist, but because almost all of her meds are IV now, and not compatible with TPN, they don't want to take chances on messing it up. That means I give almost everything. It's not very hard, but I am tired. She is fighting, so we are too. She is determined to really live in the time that she has. I am learning to do that right along side her.
We know that each day something could happen that would change everything. She can not recover from this. Having nonfunctional intestines is not compatible with life, and one day she will get sick. She's certainly hung on longer than the doctors thought she could, but as I've said many times, God has numbered her days, and He will decide which one of those is the day for a funeral.
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