Abby's blood cultures were positive. No surprise, given how she looks, but still not what we wanted to hear. She's growing gram positive rods, not sure what species yet. She's still very tired and her color is plain ole icky.
This was a loooonnnng day filled with hard conversations. What we know is that we will try to get Abby feeling a little better. Even though they would like to pull the line, we're not going to do that. They can treat her and it, but that's all. I can't even say how deeply my heart breaks with thoughts of stopping treatment. I honestly don't know how anyone does this.
Jeff tells me that we will know. We knew it was the right decision to bring her to the hospital. We will know what to do next. We have prayed over this child for 14 years. God loves her, and He is with her.
My mother in law read a story about a woman losing her husband. She said that she made one decision that felt right, and then when it was time for the next, she did what felt right again. And again. Until there were no more. I pray each day that we are able to do that.
Hopefully, tonight we will get some sleep, and tomorrow we may be able to go home on IV antibiotics. We are still praying that we are able to have some quality time with our girl, knowing that as we trusted God with the timing, it may not be what we hoped for. Doors are quietly closing all around us.
Thursday, July 12, 2012
Wednesday, July 11, 2012
Gifts and prayers
I've been trying to write for days, but there is so little time/energy to actually finish a post.
I'll try to condense what's going on.
I want to start with Monday, because it was a gift. Plain and simple. God, in his goodness gave Abby back to us for a few hours. She laughed and played. She didn't seem drugged or in pain. She spoke with a clear, strong Abby voice. I had forgotten her laugh. She's been so sick that we haven't heard it in a long time. It was like a miracle. She was so much like the old Abby, it brings tears to my eyes even now. As the day wore on, our problems returned.
But not for a single second did the return of pain and sleepiness diminish the gift of those happy moments with my daughter. I know that God gave us that refuge and I am thankful. He knew we needed her, even for a little while.
Yesterday was very hard for her. It was one of those days we just made it through. Holding and trying to comfort all day long. Today, she had a GI appointment that we had debated about keeping. We decided to see Dr. Gomaz again, to work on more comfort measures. She didn't feel well at all. She woke up with 100.5 temp and was very pale. She had pain and her belly was a little tight. An x-ray revealed large amounts of contrast from her upper GI 3 weeks ago in her intestines. Nothing is moving through that belly. It was yet another confirmation of severe dysmotility.
All that white is contrast that doesn't belong there.
Although Dr. Gomaz wanted to admit her, we decided to bring her home with a hydration and clean out the contrast plan. Unfortunately, by the time we got home, her temp was 102.8. We thought it could be the central line, so the pediatrician was going to order home IV antibiotics and fluid bolus'. When we got down to it, they realized that the antibiotic could interact with the fentanyl and tramadol she's on, so we had to bring her to the hospital to be monitored while we started antibiotics.
So, here we are. In the place I thought I'd never be again with her. And I'm glad we're here- even weirder. She looks SO bad. She's an icky yellow-gray-pale color. She's barely waking up, no matter what we do. Her heart rate has been up, blood pressure down, and sats all over. I would have been afraid at home with her level of consciousness.
This line of keeping her comfortable without being overly invasive is an awful one to walk. I'm this girls mother and I want to scream FIX IT! But, I'm this girls mother and I owe it to her to acknowledge that it can't be fixed and love her through it. We are doing antibiotics because blood infections would not be a nice way to go. We know this is Abby's last central line, but we still see treating infection as a comfort measure.
This is an extremely difficult time. We are trying to pray our way through it with every single breath. It's a blessing to have family and friends praying along with us. Jeff's mom and step dad have been here for a few weeks loving on Abby. My mom and aunt came last weekend, which was awesome. We know that we are not alone. Thanks to all of you praying each day. Can ya add Emily to that list? She's struggling with seizures and other issues that we don't have time to address, so she could definitely use some prayer time!
- Posted using BlogPress from my iPad
I'll try to condense what's going on.
I want to start with Monday, because it was a gift. Plain and simple. God, in his goodness gave Abby back to us for a few hours. She laughed and played. She didn't seem drugged or in pain. She spoke with a clear, strong Abby voice. I had forgotten her laugh. She's been so sick that we haven't heard it in a long time. It was like a miracle. She was so much like the old Abby, it brings tears to my eyes even now. As the day wore on, our problems returned.
But not for a single second did the return of pain and sleepiness diminish the gift of those happy moments with my daughter. I know that God gave us that refuge and I am thankful. He knew we needed her, even for a little while.
Yesterday was very hard for her. It was one of those days we just made it through. Holding and trying to comfort all day long. Today, she had a GI appointment that we had debated about keeping. We decided to see Dr. Gomaz again, to work on more comfort measures. She didn't feel well at all. She woke up with 100.5 temp and was very pale. She had pain and her belly was a little tight. An x-ray revealed large amounts of contrast from her upper GI 3 weeks ago in her intestines. Nothing is moving through that belly. It was yet another confirmation of severe dysmotility.
All that white is contrast that doesn't belong there.
Although Dr. Gomaz wanted to admit her, we decided to bring her home with a hydration and clean out the contrast plan. Unfortunately, by the time we got home, her temp was 102.8. We thought it could be the central line, so the pediatrician was going to order home IV antibiotics and fluid bolus'. When we got down to it, they realized that the antibiotic could interact with the fentanyl and tramadol she's on, so we had to bring her to the hospital to be monitored while we started antibiotics.
So, here we are. In the place I thought I'd never be again with her. And I'm glad we're here- even weirder. She looks SO bad. She's an icky yellow-gray-pale color. She's barely waking up, no matter what we do. Her heart rate has been up, blood pressure down, and sats all over. I would have been afraid at home with her level of consciousness.
This line of keeping her comfortable without being overly invasive is an awful one to walk. I'm this girls mother and I want to scream FIX IT! But, I'm this girls mother and I owe it to her to acknowledge that it can't be fixed and love her through it. We are doing antibiotics because blood infections would not be a nice way to go. We know this is Abby's last central line, but we still see treating infection as a comfort measure.
This is an extremely difficult time. We are trying to pray our way through it with every single breath. It's a blessing to have family and friends praying along with us. Jeff's mom and step dad have been here for a few weeks loving on Abby. My mom and aunt came last weekend, which was awesome. We know that we are not alone. Thanks to all of you praying each day. Can ya add Emily to that list? She's struggling with seizures and other issues that we don't have time to address, so she could definitely use some prayer time!
- Posted using BlogPress from my iPad
Thursday, July 5, 2012
Smile
I think I wasn't clear in my last post about not doing well. I only meant that I dreaded facing Abby in pain each day, not necessarily the day itself. I wanted to say that instead of feeling peaceful and grace-filled, I've been snappy and a little mean. I think it's normal for what we're dealing with, but I want to honor God and my daughter in each day, even if it's not an easy one. I haven't been doing either well.
I'm upset that Abby has had so much pain. We found out yesterday that the nerve block isn't likely to help, so that is probably out. That was a huge disappointment. We are beginning to run out of options.
This situation is hard because we remember Abby before she got sick. That's not easy, but heartbreaking is that she remembers. She still wants to do the things she did before and can't. I'm trying so hard not to miss her while she's still here. She misses how she was, and even though I don't want to, so do I.
Abby is in less pain. I would say about 85% of the time, she's comfortable now. Unfortunately, she is tired and dozing on and off when she isn't in pain. The amount of meds she needs to relieve the pain makes her exhausted. We knew that this would likely happen, but again, disappointing.
Last night, after Abby fell asleep, I took Sarah to see Brave. I haven't left Abby much in the last month (if you saw my hair, you'd know how true that is!), so leaving last night was hard. I know Sarah needed to get out for a bit, but I was afraid to leave Abby. When we were on our way home, I had a knot in my stomach. I realized that one day I will come home and she won't be here. There will be a day when I have to walk back into this house without my daughter.
But not this day. This day, she is here and I have morning meds to do. I have prayer time that I am trying to gear towards gracefulness. There is so much to be thankful for. Abby's strength and spirit continues to amaze me. Jeff and I are so proud of her. She has fought harder than anyone I'll ever meet, and even as she is in pain, she smiles every single day. I don't think she will ever lose that sweet smile. Thank you God for that.
Smile at someone today for Abby.
- Posted using BlogPress from my iPad
I'm upset that Abby has had so much pain. We found out yesterday that the nerve block isn't likely to help, so that is probably out. That was a huge disappointment. We are beginning to run out of options.
This situation is hard because we remember Abby before she got sick. That's not easy, but heartbreaking is that she remembers. She still wants to do the things she did before and can't. I'm trying so hard not to miss her while she's still here. She misses how she was, and even though I don't want to, so do I.
Abby is in less pain. I would say about 85% of the time, she's comfortable now. Unfortunately, she is tired and dozing on and off when she isn't in pain. The amount of meds she needs to relieve the pain makes her exhausted. We knew that this would likely happen, but again, disappointing.
Last night, after Abby fell asleep, I took Sarah to see Brave. I haven't left Abby much in the last month (if you saw my hair, you'd know how true that is!), so leaving last night was hard. I know Sarah needed to get out for a bit, but I was afraid to leave Abby. When we were on our way home, I had a knot in my stomach. I realized that one day I will come home and she won't be here. There will be a day when I have to walk back into this house without my daughter.
But not this day. This day, she is here and I have morning meds to do. I have prayer time that I am trying to gear towards gracefulness. There is so much to be thankful for. Abby's strength and spirit continues to amaze me. Jeff and I are so proud of her. She has fought harder than anyone I'll ever meet, and even as she is in pain, she smiles every single day. I don't think she will ever lose that sweet smile. Thank you God for that.
Smile at someone today for Abby.
- Posted using BlogPress from my iPad
Monday, July 2, 2012
?
I think it's only fair to say I am NOT good at this. I am not handling what Abby is going through well. At all. I can't seem to make myself care that there are reasons for everything when my child is in pain. I only want it to stop. I don't care how.
I spoke with the kidspath nurse last night and expressed, yet again, our general distress at Abby's level of pain. We all agree that she is getting heavy duty pain meds and should not be in as much pain as she is. It seems certainly related to her stomach more than the spine at this point. We hear her stomach gurgle and she screams in pain. Usually mornings are ok. She always has pain, but not as severe. Every afternoon is terrible. It almost feels like all the meds are dulling Abby, not her pain.
I dread getting up in the morning. I don't know how to help her. I'm stressed and snappy with Jeff and the girls. I'm not proud of that, just honest. I don't really have time to think about anything. We just keep trying to get through each moment.
Jeff has a few days off, and we hope to spend some quality time with all the girls. Today, the pain team added another Fentanyl patch and a pain med that works slightly differently. She still has Morphine if she needs it too. Her GI Dr. is setting up a consult for a possible celiac plexus nerve block. It would be outpatient through interventional radiology, but likely to provide the most consistent relief. We aren't sure how quickly that could happen, but obviously if it would help, I hope it would be soon.
She seems tired the last few days, which is completely understandable. Her favorite spot is lying directly on me. That's perfectly fine.
I think we are making some progress with her, it's just so slow. She has been home a week today, but it seems like much longer.
I can't say how thankful I am for all of the prayers and support we are receiving. There are cards in the mail everyday, and messages letting us know we are loved. It means everything to have so many wonderful people in our lives. Thanks for standing with us and loving my girl. We love you too <3
Posted using BlogPress from my iPad
I spoke with the kidspath nurse last night and expressed, yet again, our general distress at Abby's level of pain. We all agree that she is getting heavy duty pain meds and should not be in as much pain as she is. It seems certainly related to her stomach more than the spine at this point. We hear her stomach gurgle and she screams in pain. Usually mornings are ok. She always has pain, but not as severe. Every afternoon is terrible. It almost feels like all the meds are dulling Abby, not her pain.
I dread getting up in the morning. I don't know how to help her. I'm stressed and snappy with Jeff and the girls. I'm not proud of that, just honest. I don't really have time to think about anything. We just keep trying to get through each moment.
Jeff has a few days off, and we hope to spend some quality time with all the girls. Today, the pain team added another Fentanyl patch and a pain med that works slightly differently. She still has Morphine if she needs it too. Her GI Dr. is setting up a consult for a possible celiac plexus nerve block. It would be outpatient through interventional radiology, but likely to provide the most consistent relief. We aren't sure how quickly that could happen, but obviously if it would help, I hope it would be soon.
She seems tired the last few days, which is completely understandable. Her favorite spot is lying directly on me. That's perfectly fine.
I think we are making some progress with her, it's just so slow. She has been home a week today, but it seems like much longer.
I can't say how thankful I am for all of the prayers and support we are receiving. There are cards in the mail everyday, and messages letting us know we are loved. It means everything to have so many wonderful people in our lives. Thanks for standing with us and loving my girl. We love you too <3
Posted using BlogPress from my iPad
Subscribe to:
Posts (Atom)
LinkWithin
