Another good day for Selah. No storming at all, she's been relaxed and alert according to the nurse. Her tone has been better also. We'd hope to get back in time to go see her but we drove up in a rainstorm and we have to get all of Sam's meds done tonight.
We were able to be at our church this morning. Jon also did a service at the prison. Our house is completely ready for Selah now. Everything is in place except for the bed and other stuff that will come when she does. What a load of my shoulders to have everything done. It was a big job! Thank goodness for Val getting the house so clean! It made it easy to put everything up!
Tomorrow we hope to get the results of her blood test for inflammation. That should answer many questions for us. If it is higher than 1.1, we will know that the fish oil has not been handled correctly at some point. We feel that it is being handled correctly now. Of course we are using a new bottle now also. When Selah was tested prior to start the fish oil, her inflammation level was 15.0 In two weeks time it went to 1.1. Now we will see where it is.
A friend gave me a good idea....if you live in our area and are a nurse or know some home health nurses and you'd like to work for us. can you contact me at theclanton5@aol.com ? I can put you in touch with the agency we are working with. They are finding it difficult to find 24/7 nursing for us due to where we live. I don't know how everything is arranged but the agency can work out all the details. We'd like it all set up before we leave! And we want to leave soon!!! So rack your brains my Florida friends we need help.
Thank you for all the messages I've gotten about churches praying for Selah and us this weekend. Thank you all so much! I can't explain how prayer helps but I believe it does! I feel strengthen and ready for this coming week! Last week was very hard.....
"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Sunday, January 6, 2013
Saturday, January 5, 2013
Day 62 Fish Oil study~ much better day!
Thank God, Selah had a much better day today! We went in this morning with all the kids and she was turning towards them. She was much more aware and much more relaxed!!!! Her tone was good and she was looser.
We left for home and called several times. The only issue she had was around 8 pm, her heart rate went up to 140 and the nurse decided to give her Valium. It was a new nurse, we probably wouldn't have asked for it and just watched her. I think she was being changed and just got upset. All in all a much better day.
Obviously we feel this is all related to her fish oil. The last bottle was not consistently kept in the freezer. That is the 'best practice". This one will be. Perhaps the other one got contaminated...who knows but we saw a difference last night as soon as she got the dose!
Hopefully we will find out Monday her blood test results! Then we will know if this regression is linked to a problem with the fish oil.
We came home to the cleanest house ever! My sister in law had done our carpets and everything else!!!!!!! Thank you Val!!!!! I don't think this house has been that clean since we moved in LOLOL! What a weight off me:) My friends had cleaned up for us, but in all the working and pulling things out....we had really messed it up! She even cleaned the windows:) What a great sis in law!!!!!
So please pray for our little girl as you go to worship tomorrow and if possible ask your church to pray for her. Pray that she will be touched by God and healed. We still pray for God to deliver her.... I keep holding on to the dream I had right after the accident.... It was so real. I dreamed that she and I were in our house and suddenly she was "back" mentally The only thing that was wrong was she couldn't walk.... That would make sense now to me. Her legs/ankles are so affected that she will have to have surgery. They are pulled into a ballerina pose, very uncomfortable. At the time of the dream, the whole feet/leg thing didn't make sense to me. Her legs were just getting tone and we did not understand the ramifications of it. But now I understand. I pray that dream comes true, we can work on the feet/ankles!! Pray that our nursing situation will work out quickly so we can go home! Her room is ready and waiting for her!
Thankyou for your prayers! They have given us renewed strength!
We left for home and called several times. The only issue she had was around 8 pm, her heart rate went up to 140 and the nurse decided to give her Valium. It was a new nurse, we probably wouldn't have asked for it and just watched her. I think she was being changed and just got upset. All in all a much better day.
Obviously we feel this is all related to her fish oil. The last bottle was not consistently kept in the freezer. That is the 'best practice". This one will be. Perhaps the other one got contaminated...who knows but we saw a difference last night as soon as she got the dose!
Hopefully we will find out Monday her blood test results! Then we will know if this regression is linked to a problem with the fish oil.
We came home to the cleanest house ever! My sister in law had done our carpets and everything else!!!!!!! Thank you Val!!!!! I don't think this house has been that clean since we moved in LOLOL! What a weight off me:) My friends had cleaned up for us, but in all the working and pulling things out....we had really messed it up! She even cleaned the windows:) What a great sis in law!!!!!
So please pray for our little girl as you go to worship tomorrow and if possible ask your church to pray for her. Pray that she will be touched by God and healed. We still pray for God to deliver her.... I keep holding on to the dream I had right after the accident.... It was so real. I dreamed that she and I were in our house and suddenly she was "back" mentally The only thing that was wrong was she couldn't walk.... That would make sense now to me. Her legs/ankles are so affected that she will have to have surgery. They are pulled into a ballerina pose, very uncomfortable. At the time of the dream, the whole feet/leg thing didn't make sense to me. Her legs were just getting tone and we did not understand the ramifications of it. But now I understand. I pray that dream comes true, we can work on the feet/ankles!! Pray that our nursing situation will work out quickly so we can go home! Her room is ready and waiting for her!
Thankyou for your prayers! They have given us renewed strength!
Friday, January 4, 2013
Day 61 Fish Oil Study-what a day...
Whew.....
We got there early and Selah had already started storming.....
Some have asked what storming is...for Selah it is her heart rate rising (normal for a child her age is under 100) she can get up to 180-200! She gets stiff, she begins "vibrating" and sweating....it is awful to watch.
We talked with the doctor who seemed concerned and she ordered a bunch of tests. Xrays to rule out some hips displacement problems, and to make sure her lungs were clear. MRI to check her brain for fluid build up or any other issue, EEG to rule out seizures, bloodwork to rule out infections and a urine test. To take Selah for the tests she had to be wheeled across the inside bridge to the bigger hospital next door. Both times we went, she stormed so much we had to turn around and bring her back for some meds to calm her down. By this point Jon and I were so upset and worried. Selah could not handle any touch nor did she even like anyone to get near here, her heart rate would just climb. This went on all day. Thankfully they did the orders so she could get medication as needed to help her. I am NOT a fan of alot of meds BUT believe me if you saw your sweet child shaking you would be begging for something for her!
So every single test came back unchanged. Normal for Selah/for what was expected. No change, No seizures, no extra fluid on the brain or blood clots, no infections......
We also had her blood sent to Dr Sear's lab for her monthly blood test for inflamation. When Selah began the Fish Oil Study 61 days ago her inflamtion level was 15! That is high for a child. After one dose of fish oil, Selah never had another storm there. Within two weeks her inflamtion numbers were 1.1!!!! That was perfect! She did not have another storm until she had been here for a week. She has not had that tested since she has been here. If the number is higher than 1.1, we will feel we are correct in thinking there has been some sort of mix up with her fish oil study. We should get those results on Monday or Tuesday.
Tonight I opened a new bottle of fish oil and a new bottle of the stuff it is mixed with. Since that time her heart rate has been normal although she still seemed agaited.
One thing that really bothers me is there is not alot of respect for the fish oil study. We came here with the assurance that the hospital would work with Dr Sear's office and follow the protcol. We know the protcol has not been followed at times and now we have been questioned about the authenticy of the study. We consisitently refer them back to Strong's Hosptial or to Dr Sear's office. At Strong's the study was put to an administrative review board and it passed! It passed several reviews, the names of the reviews I can't recall right now....but Strongs' is not some crazy little country hospital....LOL It is one of the leading hospitals in the NY/Pennsylvaian Ohio region!!!! This is a real sore point for us!
We had a real down day yesterday and a sad night but God gave us the strength to get up today and fight for our daughter!
God knows we HATE what happened to Selah. We all have gone over and over the accident in our minds and all the little ways perhaps if could have been avoided. I think we will do that for the rest of our lives. We adore Selah, she was a bit of a surpise to us, we were planning on adopting another child who got adopted by someone else but we soon saw that SHE was the one God had for our family. The adoption and the adjustment into our family was flawless with both girls (WAY more easier than with Shad!!! ) All summer we kept pinching ourselves and wondering if we'd ever really have any adjustment issues....and we didn't. It was unreal and perfect:) Then....our world crashed....but we loved Selah so much we didn't give up, even when the doctors said we could just not do some medical interventions and she would pass away...we wouldn't give up! We made some promises to that little girl, that nothing could change! We stuck by her when she didn't know we were even in the room and then we had many victories and thought we might be the ones to get a medical miracle! Right now we don't know what is going to happen now....we feel like this will be resolved and she will begin recovery again but even if she doesn't we are going to be there for her 100%! I'm not telling you all this to impress you but I'm just explaining how we feel. Neither Jon nor I care about how we look to medical staff or administration,we are so far beyond that it so doesn't matter anymore. I can speak my mind and hold my head up as I walk down the hall. Why? Because Selah is my daughter handpicked by God for us and I will NOT stop fighting for her! We know where she was in recovery, we were there daily, we were in therapy with her, we worked with her. We were not fooled and we can see she is not the child who was recovering in such a marvlous way.
This has been a hard almost 5 months for us but it has been harder for Selah. I can't imagine what she has gone through. Pray for our little girl that she will begin recovering again!!!
One thing we loved her from the beginging...but having gone through this ordeal, Selah is even dearer to our hearts. We both feel very protective of her. It's funny,but when she can't really show us affection, our love for her continues to grow... Sometimes the fear of the future wells up inside of me but when I look at that precious little girl and know all she went through before we adopted her and now the accident... that gives me the strength to know we can serve and care for her no matter how intensive that care might be. And I know who we are depending on for strength also. We know God will give us the strength and wisdom we need for the job ahead. We have no choice, there is no way we are giving up on our girl!!!!
We have a great aftercare coordinator who is working on getting our nursing set in place but the one agency we'd hope to use can't give us enough staff to fill our 24/7 schedule. but we have a few people working on things. It's just a matter of time. We hope to have it resolved and nurses in place by Wednesday....we understand how this all works! We live in a rural area with few pediatric patients...please pray that this is resolved and we can get Selah home!!!!!!!
Pray that the new fish oil bottle and mixer is what is needed and the storming will stop!! Pray that we get her home to her beautiful new room, with her new swing outside and a peaceful home. Our home was the perfect size before but adding a full time nurse and with Selah having her own room, it certainly will be challenging in some ways and NO we have not heard from Extreme Home Makeover yet but hope to one day!!! We haven't decided what we are going to do yet. We probably won't build onto this house since it is not our own home, it is a parsonage and is owned by the church. I think the most important thing is to get her home and see how things work out. Our family is pretty flexable....obviously!!! And we don't have to have things perfect....but it will be perfect for her! That is the most important at this point. We can meet her needs right now with things like they are and we will figure out the rest later!
So if you attend church this weekend please ask for special prayer for Selah! Pray for peace and comfort for her. Pray that God will have mercy and heal her! Pray that the fish oil study will not be hindered in any way! Thank you!!! We want our sweet little girl back!
We got there early and Selah had already started storming.....
Some have asked what storming is...for Selah it is her heart rate rising (normal for a child her age is under 100) she can get up to 180-200! She gets stiff, she begins "vibrating" and sweating....it is awful to watch.
We talked with the doctor who seemed concerned and she ordered a bunch of tests. Xrays to rule out some hips displacement problems, and to make sure her lungs were clear. MRI to check her brain for fluid build up or any other issue, EEG to rule out seizures, bloodwork to rule out infections and a urine test. To take Selah for the tests she had to be wheeled across the inside bridge to the bigger hospital next door. Both times we went, she stormed so much we had to turn around and bring her back for some meds to calm her down. By this point Jon and I were so upset and worried. Selah could not handle any touch nor did she even like anyone to get near here, her heart rate would just climb. This went on all day. Thankfully they did the orders so she could get medication as needed to help her. I am NOT a fan of alot of meds BUT believe me if you saw your sweet child shaking you would be begging for something for her!
So every single test came back unchanged. Normal for Selah/for what was expected. No change, No seizures, no extra fluid on the brain or blood clots, no infections......
We also had her blood sent to Dr Sear's lab for her monthly blood test for inflamation. When Selah began the Fish Oil Study 61 days ago her inflamtion level was 15! That is high for a child. After one dose of fish oil, Selah never had another storm there. Within two weeks her inflamtion numbers were 1.1!!!! That was perfect! She did not have another storm until she had been here for a week. She has not had that tested since she has been here. If the number is higher than 1.1, we will feel we are correct in thinking there has been some sort of mix up with her fish oil study. We should get those results on Monday or Tuesday.
Tonight I opened a new bottle of fish oil and a new bottle of the stuff it is mixed with. Since that time her heart rate has been normal although she still seemed agaited.
One thing that really bothers me is there is not alot of respect for the fish oil study. We came here with the assurance that the hospital would work with Dr Sear's office and follow the protcol. We know the protcol has not been followed at times and now we have been questioned about the authenticy of the study. We consisitently refer them back to Strong's Hosptial or to Dr Sear's office. At Strong's the study was put to an administrative review board and it passed! It passed several reviews, the names of the reviews I can't recall right now....but Strongs' is not some crazy little country hospital....LOL It is one of the leading hospitals in the NY/Pennsylvaian Ohio region!!!! This is a real sore point for us!
We had a real down day yesterday and a sad night but God gave us the strength to get up today and fight for our daughter!
God knows we HATE what happened to Selah. We all have gone over and over the accident in our minds and all the little ways perhaps if could have been avoided. I think we will do that for the rest of our lives. We adore Selah, she was a bit of a surpise to us, we were planning on adopting another child who got adopted by someone else but we soon saw that SHE was the one God had for our family. The adoption and the adjustment into our family was flawless with both girls (WAY more easier than with Shad!!! ) All summer we kept pinching ourselves and wondering if we'd ever really have any adjustment issues....and we didn't. It was unreal and perfect:) Then....our world crashed....but we loved Selah so much we didn't give up, even when the doctors said we could just not do some medical interventions and she would pass away...we wouldn't give up! We made some promises to that little girl, that nothing could change! We stuck by her when she didn't know we were even in the room and then we had many victories and thought we might be the ones to get a medical miracle! Right now we don't know what is going to happen now....we feel like this will be resolved and she will begin recovery again but even if she doesn't we are going to be there for her 100%! I'm not telling you all this to impress you but I'm just explaining how we feel. Neither Jon nor I care about how we look to medical staff or administration,we are so far beyond that it so doesn't matter anymore. I can speak my mind and hold my head up as I walk down the hall. Why? Because Selah is my daughter handpicked by God for us and I will NOT stop fighting for her! We know where she was in recovery, we were there daily, we were in therapy with her, we worked with her. We were not fooled and we can see she is not the child who was recovering in such a marvlous way.
This has been a hard almost 5 months for us but it has been harder for Selah. I can't imagine what she has gone through. Pray for our little girl that she will begin recovering again!!!
One thing we loved her from the beginging...but having gone through this ordeal, Selah is even dearer to our hearts. We both feel very protective of her. It's funny,but when she can't really show us affection, our love for her continues to grow... Sometimes the fear of the future wells up inside of me but when I look at that precious little girl and know all she went through before we adopted her and now the accident... that gives me the strength to know we can serve and care for her no matter how intensive that care might be. And I know who we are depending on for strength also. We know God will give us the strength and wisdom we need for the job ahead. We have no choice, there is no way we are giving up on our girl!!!!
We have a great aftercare coordinator who is working on getting our nursing set in place but the one agency we'd hope to use can't give us enough staff to fill our 24/7 schedule. but we have a few people working on things. It's just a matter of time. We hope to have it resolved and nurses in place by Wednesday....we understand how this all works! We live in a rural area with few pediatric patients...please pray that this is resolved and we can get Selah home!!!!!!!
Pray that the new fish oil bottle and mixer is what is needed and the storming will stop!! Pray that we get her home to her beautiful new room, with her new swing outside and a peaceful home. Our home was the perfect size before but adding a full time nurse and with Selah having her own room, it certainly will be challenging in some ways and NO we have not heard from Extreme Home Makeover yet but hope to one day!!! We haven't decided what we are going to do yet. We probably won't build onto this house since it is not our own home, it is a parsonage and is owned by the church. I think the most important thing is to get her home and see how things work out. Our family is pretty flexable....obviously!!! And we don't have to have things perfect....but it will be perfect for her! That is the most important at this point. We can meet her needs right now with things like they are and we will figure out the rest later!
So if you attend church this weekend please ask for special prayer for Selah! Pray for peace and comfort for her. Pray that God will have mercy and heal her! Pray that the fish oil study will not be hindered in any way! Thank you!!! We want our sweet little girl back!
Thursday, January 3, 2013
Day 60 Fish Oil study
Back on Day 1, I thought by Day 60 Selah would be so far ahead than what she is today.
We had our weekly meeting today. Basically it comes down to we are not happy nor do we have the same level of teamwork/trust as we had in NY. We asked to be transferred but that is almost impossible since she is not acutely ill. We already understood that but had hoped they may want to transfer us so we put it out as an option. We are hoping for a release date of Monday and alot of things are falling into place so that might just happen. Jon & I are going over training/discharge paperwork in order to leave on Monday if the nursing is set up. That all is being worked on by different agencies. Pray that we will have everything in place by Monday with 24 hour nursing as we have requested due to our circumstances. Thankfully in our state, they do have to take into consideration our other children. I'm not sure how often they've had a family with three disabled children. But everyone seems to think that will tip the scales in our favor.
Selah had a storm at 3:30 PM her new regular time. Then she got her meds. The storm only lasted about 10 minutes. But then at 4:30 pm it started again. It took her about 45 minutes to bring herself down. We have no idea why she is having storms again. All I say is once she had started the fish oil study on Day 1 she went from storming several times a day to no storming again until a couple of weeks ago. The fish oil bottle was changed (we thought it had been compromised) and she didn't have another storm until this past Tuesday.
She was evaluated by a neurologist who was called in. In a nutshell the neuro basically said Selah was at the same place as she was in NY according to their (NY) records....The neuro said it was "how she was viewed or how it was interpreted or read" Basically that means Selah is the same, we all misunderstood her in NY...... If it was not so asinine, I would have to laugh but at this point I just want to cry....I can't even discuss how we feel about this but to say we do NOT agree that she is the same as she was in NY! Two major documented differences...1. she had quit storming in NY 2. she was swallowing in NY... Those aren't things that are open to interpretation or subjective views......
Jon and I just have our heads down and are plodding along, making sure we have everything ready for her release on Monday. We are beat down and discouraged in a way we have not been before. At least during the hard times in NY we had confidence in those who were working with Selah. That makes a huge difference when you feel everything that can be done is being done. If there were any questions about her health, they turned over every stone to make sure she had proper care! We didn't have to ask for it, it happened in the course of treatment! Can I say again how much we love Strong's Hospital in Rochester NY! We knew we were in the best hands and had confidence in that! We do appreciate the nurses who have been working with Selah here, we have three lovely ladies who do the majority of her nursing and they are great and caring. One is from Eastern Europe herself, one from Morocco and one homegrown:) But this is far different than Strong's
So our prayer request is that everything comes together in the way we need in order for us to be most comfortable in bringing her home. We really want to go home on Monday with her. Our family needs to be home. Up until this past week or so I've not even let myself think about going home and actually living there with our family. I am so ready..... I think we are all at a breaking point, Jon, me and the kids. The kids have all been so great and have had wonderful attitudes through this whole ordeal but they need structure in their lives again. I'm really proud of Steve and Shad, they have not complained at all about losing their room and having to sleep on the floor. Honestly not one word or grumble, they've treated it like an adventure:) They've all "gone with the flow" Last night Sarah had a nightmare and woke up screaming and shaking. I had to hold her and sing to her for her to calm down. She was doing the long shuddering breaths....she finally calmed down. I think we haven't given her enough attention the last few days. I stayed home with them this morning and held her and fed her and talked to her... I think just a few months ago she was living in a mental institution. Now she just goes with the flow and has adapted so well to everything but some days she just needs Mama! And I need her and her sweet laugh!!! But we are all ready to be home, even tho home will be so different......
I have never tried to say what I thought our future looked like....we hope and pray for Selah's healing. I can't believe this is the ending we will have.... but I don't know.... I cry out to Jesus every night and every morning when I wake up. It comes welling up from inside of me. Sometimes when I am half asleep, I find myself fervently praying for Selah without evern thinking about it. I ask for His mercy over Selah.... I ask for Grace to walk whatever path that lies in front of us. I don't understand why others have had a recovery and Selah hasn't.... But I am still going to trust God.
These past almost 5 months have been the hardest walk I've ever had...and there is no end in sight right now. Please pray for Jon & me, we need your prayers, now more than ever....
Thank you all again for your prayers and for your many kindnesses to our family. I am beyond behind on thank yous but please know we do not take anything for granted. We have learned by the outpouring of love to know how much it means to be reached out to. There has been times in other's situations that I thought maybe I should send a card or something but figured it wouldn't mean that much, probably so many others were doing it ....OH but it does mean so much !!!!! I'll never squash that impulse again even if I barely know the person or even if I don't know the person! So thank you all!
We had our weekly meeting today. Basically it comes down to we are not happy nor do we have the same level of teamwork/trust as we had in NY. We asked to be transferred but that is almost impossible since she is not acutely ill. We already understood that but had hoped they may want to transfer us so we put it out as an option. We are hoping for a release date of Monday and alot of things are falling into place so that might just happen. Jon & I are going over training/discharge paperwork in order to leave on Monday if the nursing is set up. That all is being worked on by different agencies. Pray that we will have everything in place by Monday with 24 hour nursing as we have requested due to our circumstances. Thankfully in our state, they do have to take into consideration our other children. I'm not sure how often they've had a family with three disabled children. But everyone seems to think that will tip the scales in our favor.
Selah had a storm at 3:30 PM her new regular time. Then she got her meds. The storm only lasted about 10 minutes. But then at 4:30 pm it started again. It took her about 45 minutes to bring herself down. We have no idea why she is having storms again. All I say is once she had started the fish oil study on Day 1 she went from storming several times a day to no storming again until a couple of weeks ago. The fish oil bottle was changed (we thought it had been compromised) and she didn't have another storm until this past Tuesday.
She was evaluated by a neurologist who was called in. In a nutshell the neuro basically said Selah was at the same place as she was in NY according to their (NY) records....The neuro said it was "how she was viewed or how it was interpreted or read" Basically that means Selah is the same, we all misunderstood her in NY...... If it was not so asinine, I would have to laugh but at this point I just want to cry....I can't even discuss how we feel about this but to say we do NOT agree that she is the same as she was in NY! Two major documented differences...1. she had quit storming in NY 2. she was swallowing in NY... Those aren't things that are open to interpretation or subjective views......
Jon and I just have our heads down and are plodding along, making sure we have everything ready for her release on Monday. We are beat down and discouraged in a way we have not been before. At least during the hard times in NY we had confidence in those who were working with Selah. That makes a huge difference when you feel everything that can be done is being done. If there were any questions about her health, they turned over every stone to make sure she had proper care! We didn't have to ask for it, it happened in the course of treatment! Can I say again how much we love Strong's Hospital in Rochester NY! We knew we were in the best hands and had confidence in that! We do appreciate the nurses who have been working with Selah here, we have three lovely ladies who do the majority of her nursing and they are great and caring. One is from Eastern Europe herself, one from Morocco and one homegrown:) But this is far different than Strong's
So our prayer request is that everything comes together in the way we need in order for us to be most comfortable in bringing her home. We really want to go home on Monday with her. Our family needs to be home. Up until this past week or so I've not even let myself think about going home and actually living there with our family. I am so ready..... I think we are all at a breaking point, Jon, me and the kids. The kids have all been so great and have had wonderful attitudes through this whole ordeal but they need structure in their lives again. I'm really proud of Steve and Shad, they have not complained at all about losing their room and having to sleep on the floor. Honestly not one word or grumble, they've treated it like an adventure:) They've all "gone with the flow" Last night Sarah had a nightmare and woke up screaming and shaking. I had to hold her and sing to her for her to calm down. She was doing the long shuddering breaths....she finally calmed down. I think we haven't given her enough attention the last few days. I stayed home with them this morning and held her and fed her and talked to her... I think just a few months ago she was living in a mental institution. Now she just goes with the flow and has adapted so well to everything but some days she just needs Mama! And I need her and her sweet laugh!!! But we are all ready to be home, even tho home will be so different......
I have never tried to say what I thought our future looked like....we hope and pray for Selah's healing. I can't believe this is the ending we will have.... but I don't know.... I cry out to Jesus every night and every morning when I wake up. It comes welling up from inside of me. Sometimes when I am half asleep, I find myself fervently praying for Selah without evern thinking about it. I ask for His mercy over Selah.... I ask for Grace to walk whatever path that lies in front of us. I don't understand why others have had a recovery and Selah hasn't.... But I am still going to trust God.
These past almost 5 months have been the hardest walk I've ever had...and there is no end in sight right now. Please pray for Jon & me, we need your prayers, now more than ever....
Thank you all again for your prayers and for your many kindnesses to our family. I am beyond behind on thank yous but please know we do not take anything for granted. We have learned by the outpouring of love to know how much it means to be reached out to. There has been times in other's situations that I thought maybe I should send a card or something but figured it wouldn't mean that much, probably so many others were doing it ....OH but it does mean so much !!!!! I'll never squash that impulse again even if I barely know the person or even if I don't know the person! So thank you all!
Wednesday, January 2, 2013
Day 59 Fish Oil Study~ complete bad news
I do not even know how to write all that has happened today and all that is on our minds...
This morning we came in Selah's room and her right arm was lying out by her side like she was on a cross. It looked so odd that it caught my attention immediately. I went over and went to move it and she winced and her heart rate soared. I stopped moving it and went and told the nurse I wanted a doctor in to see her because I thought her arm was hurt. An hour or so passed and the doctor came in and said nothing was wrong she was doing a new movement/posturing. The OT had also come and saw it and thought it looked odd, not something Selah's body was doing on her own. We still asked for an xray that took hours to get and more hours to read and get the results. Tonight the results came that there was no broken or fractured bones. She stormed today right after they were doing the xray for about 5 -10 minutes again. She reacted to being moved as if it really hurt her. All the doctor would say is maybe she is sore from the spacity and that is why she reacted like that. I have no idea...my gut tells me NO!
This is a new doctor to us. We went through all of the ways Selah has regressed since she has been transferred here. The doctor, of course, puts the blame on Selah. "She has had so much brain damage, she is unstable" I kept repeatedly saying that she was stable for weeks and weeks in NY. It was like talking to a wall. She did call in a neurologist, who will come in tomorrow. She seems to think that Selah "just happened to decline" when she came here as that is part of the whole brain injury situation. We do NOT believe that for a moment! She also suggested that something may have happened on the plane trip, but she was hooked up to everything and nothing registered a problem. She also suggested Selah may have increased water on the brain. She thinks a CAT scan (because it is easier to schedule) should be done. We disagree, we want an MRI because it is much safer and Selah has had a couple of CAT scans so we are done with those for now!!! We've asked for a MRI for weeks and they act like it is soooo hard to schedule one. Truth is NO ONE has tried to schedule one to my knowledge.
I am beyond frustrated tonight. Since the day we arrived, we were shocked at the decline in Selah. It took us 2 days to drive here and in those 2 days we couldn't believe the change in Selah. It has gone from bad to worse. We do not feel that we are listened to at all. We constantly tell them to call our therapists and doctors in NY for more details and to my knowledge that isn't done. We feel like they think we are just very unrealistic parents who thought there was a tiny bit of improvement in their hopeless child.
Please don't make a ton of suggestions. Right now we just want to get her home. It is almost impossible to transfer her to another hospital at this point. We know, remember we were in NY for 18 weeks? At least 12 of those weeks trying to get to Florida. Just pray that Selah will not decline any further and that all the insurances/planning will come together and that she will be ready to leave with 24 hour nursing on Monday.
Jon and I are very upset, worried and distraught. We do not know what is wrong but there is something terribly wrong here. I still believe it comes back to mishandling of the fish oil. I have no proof of that now as it is not brought into her room until it is already mixed but the smell is gone again. Her clothes still have a smell but tonight I just buried my face into her hair and all I could smell was Selah...not fish oil. I just want to get her home although I am petrified of the responsibility....
We watched some videos we made of her in NY in therapy after the accident and we both cried because she looked so good and aware. She was making great eye contact and doing things. Now she is barely there again....it's awful to have had such great progress just to see it slip away. I think that hurts more than anything!!!!
This morning we came in Selah's room and her right arm was lying out by her side like she was on a cross. It looked so odd that it caught my attention immediately. I went over and went to move it and she winced and her heart rate soared. I stopped moving it and went and told the nurse I wanted a doctor in to see her because I thought her arm was hurt. An hour or so passed and the doctor came in and said nothing was wrong she was doing a new movement/posturing. The OT had also come and saw it and thought it looked odd, not something Selah's body was doing on her own. We still asked for an xray that took hours to get and more hours to read and get the results. Tonight the results came that there was no broken or fractured bones. She stormed today right after they were doing the xray for about 5 -10 minutes again. She reacted to being moved as if it really hurt her. All the doctor would say is maybe she is sore from the spacity and that is why she reacted like that. I have no idea...my gut tells me NO!
This is a new doctor to us. We went through all of the ways Selah has regressed since she has been transferred here. The doctor, of course, puts the blame on Selah. "She has had so much brain damage, she is unstable" I kept repeatedly saying that she was stable for weeks and weeks in NY. It was like talking to a wall. She did call in a neurologist, who will come in tomorrow. She seems to think that Selah "just happened to decline" when she came here as that is part of the whole brain injury situation. We do NOT believe that for a moment! She also suggested that something may have happened on the plane trip, but she was hooked up to everything and nothing registered a problem. She also suggested Selah may have increased water on the brain. She thinks a CAT scan (because it is easier to schedule) should be done. We disagree, we want an MRI because it is much safer and Selah has had a couple of CAT scans so we are done with those for now!!! We've asked for a MRI for weeks and they act like it is soooo hard to schedule one. Truth is NO ONE has tried to schedule one to my knowledge.
I am beyond frustrated tonight. Since the day we arrived, we were shocked at the decline in Selah. It took us 2 days to drive here and in those 2 days we couldn't believe the change in Selah. It has gone from bad to worse. We do not feel that we are listened to at all. We constantly tell them to call our therapists and doctors in NY for more details and to my knowledge that isn't done. We feel like they think we are just very unrealistic parents who thought there was a tiny bit of improvement in their hopeless child.
Please don't make a ton of suggestions. Right now we just want to get her home. It is almost impossible to transfer her to another hospital at this point. We know, remember we were in NY for 18 weeks? At least 12 of those weeks trying to get to Florida. Just pray that Selah will not decline any further and that all the insurances/planning will come together and that she will be ready to leave with 24 hour nursing on Monday.
Jon and I are very upset, worried and distraught. We do not know what is wrong but there is something terribly wrong here. I still believe it comes back to mishandling of the fish oil. I have no proof of that now as it is not brought into her room until it is already mixed but the smell is gone again. Her clothes still have a smell but tonight I just buried my face into her hair and all I could smell was Selah...not fish oil. I just want to get her home although I am petrified of the responsibility....
We watched some videos we made of her in NY in therapy after the accident and we both cried because she looked so good and aware. She was making great eye contact and doing things. Now she is barely there again....it's awful to have had such great progress just to see it slip away. I think that hurts more than anything!!!!
Day 58 fish Oil Study:(
After yesterday I thought I'd have more great stuff to write about.....today Jon changed her trach and she had a small storm. It only lasted 5-10 minutes but still her heartbeat went up to 170 and she shook. She has never had a reaction to her trach being changed before and they did it really quick. She brought herself down and didn't need any extra meds. she hasn't had another problem but I am worried about tomorrow....I'm worried about the fish oil.... she had NO problems in NY. She was as stable as she could be under the circumstances, she was progressing daily or at least was staying the same daily and hitting new milestones every few days. I do not believe this regression we have seen is because Selah herself is unstable. I don't feel it in my gut. I trust my gut instinct, I've had almost 9 yrs of dealing with a sick/handicapped child. My gut has always been right. My gut tells me that something with the fish oil is off. When it was started 58 days ago, she went from having "storming" daily, often several times a day, to no storming, no matter what was asked of her (in therapy) That remained consistent even when she had pneumonia. she was amazing everyone....what has changed? Her location and the way the fish oil has been treated. Now although we had felt everything had been addressed, this has happened again. I know if I go to the doctors about this they will just tell me that Selah was a near drowning and near drownings are unstable...... Well most might be but she has never been once the fish oil was started. I am just sick about this....
Please pray for Selah....pray that there will be no more episodes and that we can get everything set up for her to be transferred home asap!!! When she is home ~ Jon or I will be the only ones to touch her fish oil. We will make sure that it is done correctly. We know she is the 7th person to be admitted into this study. The other 6 recovered from their comas, some did have some physical delays but they all recovered. We saw so much recovery in the first 40 days it was unreal! We believe that she will regain the function she had in NY and improve beyond that if things are done correctly.
Tonight I accidentally called Strong's Hospital instead of the one she is in now (they are both listed under Selah in my phone) I asked for her nurse and the floor receptionist caught my voice and we started laughing. She & I spoke for a few minutes and she told me how they all think of us...I could have cried....I loved those folks so much and had so much trust in them.... I do not feel the same about where she is now. Although we do have some lovely nurses that we like and would be glad to take a few of them home with us to work with her. But overall it is not the same and that is hard for me. I feel like Selah is just looked at as "another drowning case" and "you know they don't progress" I don't feel like they believe us about her progress in NY although they've talked to her therapists in NY.
Selah is different as every case is different....we saw real progress. Now we see real regression...she was stable too long for this type of regression at this point in the recovery process. Something is not right....
Please pray for Selah and for us that we have wisdom.
Please pray for Selah....pray that there will be no more episodes and that we can get everything set up for her to be transferred home asap!!! When she is home ~ Jon or I will be the only ones to touch her fish oil. We will make sure that it is done correctly. We know she is the 7th person to be admitted into this study. The other 6 recovered from their comas, some did have some physical delays but they all recovered. We saw so much recovery in the first 40 days it was unreal! We believe that she will regain the function she had in NY and improve beyond that if things are done correctly.
Tonight I accidentally called Strong's Hospital instead of the one she is in now (they are both listed under Selah in my phone) I asked for her nurse and the floor receptionist caught my voice and we started laughing. She & I spoke for a few minutes and she told me how they all think of us...I could have cried....I loved those folks so much and had so much trust in them.... I do not feel the same about where she is now. Although we do have some lovely nurses that we like and would be glad to take a few of them home with us to work with her. But overall it is not the same and that is hard for me. I feel like Selah is just looked at as "another drowning case" and "you know they don't progress" I don't feel like they believe us about her progress in NY although they've talked to her therapists in NY.
Selah is different as every case is different....we saw real progress. Now we see real regression...she was stable too long for this type of regression at this point in the recovery process. Something is not right....
Please pray for Selah and for us that we have wisdom.
Monday, December 31, 2012
Day 57 fish oil~good news~ News clip
http://www.13wham.com/mediacenter/local.aspx
Our family's story was one featured on the Rochester NY news as stories of the year. I believe the story is not so much about the accident, although that was life altering for our family but I believe the true story here is God's faithfulness. If you want to view it, you have to click down to our story it is #6 on the right side on the bottom. It's very sweet and done very compassionate.
Today Selah held her head up for about 15 seconds. That is the best she has done since she has been here. We are thrilled. We are also thrilled that when I did her wash today, her clothes reeked of fish oil! She still doesn't smell as strongly as she did to me but she is getting there. It looks like we won't leave on Wednesday, with the holidays, it has been difficult to get the insurances to do everything they are supposed to do to get things started and which insurance will pay what....I'm not surprised and it's ok. Remember we tried to leave NY for months:) I'm glad we didn't but we certainly aren't surprised it may take a few more days to get this all set up. Thankfully our house and yard will be done and all her supplies will be delivered and set up before she gets home.
I've also noticed that when she gets annoyed, she is starting to lift her head and shoulders up off the bed again. She did that before while she was in the hospital in NY and sometimes she did it to welcome us into the room. We look forward to Selah getting more back to her normal!
I had some money left over on a Target card (thanks friend!) and I bought Selah two "coming home" outfits! I'm looking forward to putting one of them on her ( and having a spare!) when she leaves!
We had supper provided for by Deerwood Publix tonight... Publix subs and sweet tea....WOOHOO! Nothing better:) thanks Publix!
Happy New Year to all. We are staying safe and sound inside watching National Geo....a story on the Mayans LOL taped before Dec 21 LOL! At least it is interesting! Stay safe tonight everyone!!!!
Our family's story was one featured on the Rochester NY news as stories of the year. I believe the story is not so much about the accident, although that was life altering for our family but I believe the true story here is God's faithfulness. If you want to view it, you have to click down to our story it is #6 on the right side on the bottom. It's very sweet and done very compassionate.
Today Selah held her head up for about 15 seconds. That is the best she has done since she has been here. We are thrilled. We are also thrilled that when I did her wash today, her clothes reeked of fish oil! She still doesn't smell as strongly as she did to me but she is getting there. It looks like we won't leave on Wednesday, with the holidays, it has been difficult to get the insurances to do everything they are supposed to do to get things started and which insurance will pay what....I'm not surprised and it's ok. Remember we tried to leave NY for months:) I'm glad we didn't but we certainly aren't surprised it may take a few more days to get this all set up. Thankfully our house and yard will be done and all her supplies will be delivered and set up before she gets home.
I've also noticed that when she gets annoyed, she is starting to lift her head and shoulders up off the bed again. She did that before while she was in the hospital in NY and sometimes she did it to welcome us into the room. We look forward to Selah getting more back to her normal!
I had some money left over on a Target card (thanks friend!) and I bought Selah two "coming home" outfits! I'm looking forward to putting one of them on her ( and having a spare!) when she leaves!
We had supper provided for by Deerwood Publix tonight... Publix subs and sweet tea....WOOHOO! Nothing better:) thanks Publix!
Happy New Year to all. We are staying safe and sound inside watching National Geo....a story on the Mayans LOL taped before Dec 21 LOL! At least it is interesting! Stay safe tonight everyone!!!!
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