We are starting the process to get Selah into a study involving fish oil. If you've seen my latest posts, you may have read the story that was on CNN about the benefits of fish oil for comatose patients. A mom whose daughter takes fish oil for other reasons put us in touch with the team that is working on this. It happened FAST, like most good things do:) Today there was discussion on both sides and it looks favorable that Strong's will work with this study! We are excited and anxious at the same time. Obviously we are excited because of the two men who were given NO hope and then given the fish oil, they recovered! Selah is actually in a better place than they were at the time they were started on the fish oil. She is doing more things and is stable. We are anxious because there is alot of things that have to come together to make all of this work, so far Strong's has seemed open to this study, we just hope all the details can be ironed out quickly and she can be started on it. So please pray that everything will come together and that Selah will be another success story! I have not seen that any other children with near drownings have participated in this study so perhaps she will be a trail blazer!
Today has not been a great day for her, her heart rate and blood pressure stayed up off and on since late last night. It was never so high that she had to have any additional meds but we like for it to be normal and stable. Please pray for Selah that she will have a good night.
I want to say thank you to so many folks who have done things for our family. I had gotten thank you cards and had many addresses written down to send thank yous to and now I can't find my address sheet! I am so sorry and I hope you all know how much we appreciate all the things that folks have done for our family! God has just surrounded us with loving people! I hope I can find the addresses, but please know we appreciate each one and many cards and letters have brought us to tears!!!!!
"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, October 21, 2012
Saturday, October 20, 2012
The Best Day Ever....
That's a silly Sponge Bob song but ....today has been THE BEST DAY EVER!!!!! This has been the best day since the accident!
Selah was responsive and relaxed all day long. She was looking at us, following us with her eyes. She tolerated being in her chair for an hour or more. Then she made her "crying face" and her heart rate went high quickly. I grabbed her up and put her to bed and she immediately calmed down and stayed calm!!! She wore her "nose" for 3 hours with no issues. A "nose" is a filter that hooks over the trach and acts like our nose, it filters air and it humidifies the air going into her lungs. This is great for her because we can transport her without the tube that humidifies her air now that is large. That means we can take her outside in the stroller, put her in her swing and be alot more flexible.
We got her a new stuffed animal that is weighted and can be heated in the microwave. I used it today on her legs and arms. She was had her hands completely open and resting on it. That is huge since just weeks ago, her hands were clutched into fists! Her legs relaxed and pointed down in a normal way. I was able to even work with her feet/ankles! She was much more relaxed than usual. We also saw her move her head a few times on her own!
The attending doctor was open to her getting fish oil. He sent a request to the pharmacy to make sure it would be ok to give with her current meds and we are still waiting to her.
Tonight we went out to eat and to buy her another one of the microwaveable stuffed animals so she can have one for each leg. We also went to a Trader's Joe! FUN! We bought some healthier snacks and breakfast foods. We've not been eating the healthiest in the past few weeks, to say the least. I think we will all have to detox when we get home from all the snack foods/soda/candy.....my kids are going to have a rude awakening:)
Please keep praying for Selah, we are seeing answers to prayers! Please pray that she will get the gag/cough reflex back and that she will continue to improve in all areas. Tomorrow is Sunday, so if you attend church, please ask for special prayers for our sweet girl! Thank you!!!!
Selah was responsive and relaxed all day long. She was looking at us, following us with her eyes. She tolerated being in her chair for an hour or more. Then she made her "crying face" and her heart rate went high quickly. I grabbed her up and put her to bed and she immediately calmed down and stayed calm!!! She wore her "nose" for 3 hours with no issues. A "nose" is a filter that hooks over the trach and acts like our nose, it filters air and it humidifies the air going into her lungs. This is great for her because we can transport her without the tube that humidifies her air now that is large. That means we can take her outside in the stroller, put her in her swing and be alot more flexible.
We got her a new stuffed animal that is weighted and can be heated in the microwave. I used it today on her legs and arms. She was had her hands completely open and resting on it. That is huge since just weeks ago, her hands were clutched into fists! Her legs relaxed and pointed down in a normal way. I was able to even work with her feet/ankles! She was much more relaxed than usual. We also saw her move her head a few times on her own!
The attending doctor was open to her getting fish oil. He sent a request to the pharmacy to make sure it would be ok to give with her current meds and we are still waiting to her.
Tonight we went out to eat and to buy her another one of the microwaveable stuffed animals so she can have one for each leg. We also went to a Trader's Joe! FUN! We bought some healthier snacks and breakfast foods. We've not been eating the healthiest in the past few weeks, to say the least. I think we will all have to detox when we get home from all the snack foods/soda/candy.....my kids are going to have a rude awakening:)
Please keep praying for Selah, we are seeing answers to prayers! Please pray that she will get the gag/cough reflex back and that she will continue to improve in all areas. Tomorrow is Sunday, so if you attend church, please ask for special prayers for our sweet girl! Thank you!!!!
Ups and downs....
Well first the GREAT news.......the OT said Selah is on the brink of making cooing noises like a baby.... she also said Selah understands that the OT is there to work with her and shows it in her body language that she doesn't like that! She pulls away from her as soon as the OT starts talking to her!! So that means she is not responding just from pain but from the anticipation of pain!!! It means she is thinking!!!!! Also yesterday she moved JUST one arm at a time! That is a big deal!!!!!" She has a long way to go, she is not constant with her responses and there are big gaps in what she should be doing but every week we see some improvement. Please keep praying for her
Just today we had a friend and an unknown writer to the blog send us the same article about Fish Oil and how it can help brain injuries! We are taking the article to the hospital tomorrow and have some hope,
http://www.cnn.com/2012/10/19/health/fish-oil-brain-injuries/index.html?hpt=us_c2&fb_source=message
This afternoon we took the kids to the Strong's Museum again. They had a great time
We got news from Lakeland Regional Medical Center. They refused to take Selah as a patient. Their reason this time was that there was the possibility of her getting sicker and may need to be transferred because they don't have the specialists for her care. The doctors and staff here at Strong's in Rochester are "amazed" with the problems we have had in getting her into a hospital in Florida! Strong's Hospital sees her as "disabled" but "stable" Last week I spoke to an administrator at LRMC who first said that Selah was too sick for LRMC since she was on a vent. I stopped her and told her that Selah hadn't been on a vent for weeks, and asked if she had truly reviewed Selah's records. Then she told me that since Selah wasn't on a vent, just a trach that she should just go to a nursing home. As you can imagine, the conversation went downhill from there!!
This Monday I called the CEO's office and said I wanted them to reconsider her as a patient since I didn't not believe or really understand what I was told the previous week by the administrator who couldn't tell if she was too sick or not sick enough for her to go to LRMC! So they had a meeting today and came up with this reason...that she could get sicker and have to be transferred.....REALLY?
The team here had felt that the medical staff of LRMC was very open to Selah coming to them, but then it seemed administratively , things changed..... I know for a fact that LRMC take kids on trachs and g-tubes...
LRMC has been a good hospital for our family. Sam was born there and has been hospitalized there probably at least 10 times. There were a couple of times when he was too ill or unstable for him to stay there and had to be transferred out. I understand that LRMC is not a hospital where they have many different pediatric specialists. We certainly wouldn't have asked for Selah to have been transferred immediately following the accident but it's been 10 weeks..... However, Selah is stable enough that IF we lived in NY, Strong's would have already transitioned us to home and Jon and I would be taking care of her. Somehow I think LRMC is a little more qualified than we are! The reason we have to have her transferred to a hospital in Florida is that she will be air transported to Florida and we have to make sure that she stays stable following the trip. Also WE need her to be in a hospital situation for 2-3 weeks as we get our home ready for her and nursing care set up. Plus you factor in the fact we've been away from home for 10 weeks now and will need to do alot of things to get back to normal. We wanted her to be in LRMC for many reasons, we know the doctors and nursing staff, the hospital is very clean and secure, it's only 20 minutes from our home, close to family and friends who can visit and/of watch our kids while we are with Selah...but nothing seemed to matter. LRMC does not seem like a very "hospitable hospital" to us right now. I would have thought that they would have wanted to help our family out but that does not seem to be the case. I am very disappointed in them.
I actually looked at a pediatric nursing home about 2 hours away from us, they don't have an opening nor are they set up for patients that would only be there for a few weeks, they are a long term facility. Then I began researching pediatric nursing homes in Florida and found that the Department of Justice (DOJ) is investigating all of the pediatric nursing homes in Florida for several reasons and the main one, is that families say their children go into the nursing homes and then the nursing homes will not let them go home! The nursing homes get so much money for the children and don't want them to go home! So nursing homes are NOT something we are planning to do!
So the team here is looking at a Tampa hospital for Selah. It will be much harder for us to visit her on a daily basis. We want the best for our child, which is to get her home but we need somewhere for her to go before that can happen. Please pray that this situation will be worked out. Also when we get home, we have to make decisions about what we are going to do about our home. We can move the boys out of their room into the living room for the short term but we will either have to add to our home or move. We may look at buying/building a home since we live in the church's parsonage which is not our personal home. So putting thousands of dollars into it to change things for her might not be the best idea. We've thought of several things but right now we just need to get home, set things up for the short term, then we can get her home!
So roller coaster day....but honestly we are so encouraged by Selah's responses and progress that nothing else matters.
Just today we had a friend and an unknown writer to the blog send us the same article about Fish Oil and how it can help brain injuries! We are taking the article to the hospital tomorrow and have some hope,
http://www.cnn.com/2012/10/19/health/fish-oil-brain-injuries/index.html?hpt=us_c2&fb_source=message
We got news from Lakeland Regional Medical Center. They refused to take Selah as a patient. Their reason this time was that there was the possibility of her getting sicker and may need to be transferred because they don't have the specialists for her care. The doctors and staff here at Strong's in Rochester are "amazed" with the problems we have had in getting her into a hospital in Florida! Strong's Hospital sees her as "disabled" but "stable" Last week I spoke to an administrator at LRMC who first said that Selah was too sick for LRMC since she was on a vent. I stopped her and told her that Selah hadn't been on a vent for weeks, and asked if she had truly reviewed Selah's records. Then she told me that since Selah wasn't on a vent, just a trach that she should just go to a nursing home. As you can imagine, the conversation went downhill from there!!
This Monday I called the CEO's office and said I wanted them to reconsider her as a patient since I didn't not believe or really understand what I was told the previous week by the administrator who couldn't tell if she was too sick or not sick enough for her to go to LRMC! So they had a meeting today and came up with this reason...that she could get sicker and have to be transferred.....REALLY?
The team here had felt that the medical staff of LRMC was very open to Selah coming to them, but then it seemed administratively , things changed..... I know for a fact that LRMC take kids on trachs and g-tubes...
LRMC has been a good hospital for our family. Sam was born there and has been hospitalized there probably at least 10 times. There were a couple of times when he was too ill or unstable for him to stay there and had to be transferred out. I understand that LRMC is not a hospital where they have many different pediatric specialists. We certainly wouldn't have asked for Selah to have been transferred immediately following the accident but it's been 10 weeks..... However, Selah is stable enough that IF we lived in NY, Strong's would have already transitioned us to home and Jon and I would be taking care of her. Somehow I think LRMC is a little more qualified than we are! The reason we have to have her transferred to a hospital in Florida is that she will be air transported to Florida and we have to make sure that she stays stable following the trip. Also WE need her to be in a hospital situation for 2-3 weeks as we get our home ready for her and nursing care set up. Plus you factor in the fact we've been away from home for 10 weeks now and will need to do alot of things to get back to normal. We wanted her to be in LRMC for many reasons, we know the doctors and nursing staff, the hospital is very clean and secure, it's only 20 minutes from our home, close to family and friends who can visit and/of watch our kids while we are with Selah...but nothing seemed to matter. LRMC does not seem like a very "hospitable hospital" to us right now. I would have thought that they would have wanted to help our family out but that does not seem to be the case. I am very disappointed in them.
I actually looked at a pediatric nursing home about 2 hours away from us, they don't have an opening nor are they set up for patients that would only be there for a few weeks, they are a long term facility. Then I began researching pediatric nursing homes in Florida and found that the Department of Justice (DOJ) is investigating all of the pediatric nursing homes in Florida for several reasons and the main one, is that families say their children go into the nursing homes and then the nursing homes will not let them go home! The nursing homes get so much money for the children and don't want them to go home! So nursing homes are NOT something we are planning to do!
So the team here is looking at a Tampa hospital for Selah. It will be much harder for us to visit her on a daily basis. We want the best for our child, which is to get her home but we need somewhere for her to go before that can happen. Please pray that this situation will be worked out. Also when we get home, we have to make decisions about what we are going to do about our home. We can move the boys out of their room into the living room for the short term but we will either have to add to our home or move. We may look at buying/building a home since we live in the church's parsonage which is not our personal home. So putting thousands of dollars into it to change things for her might not be the best idea. We've thought of several things but right now we just need to get home, set things up for the short term, then we can get her home!
So roller coaster day....but honestly we are so encouraged by Selah's responses and progress that nothing else matters.
Thursday, October 18, 2012
Ronald McDonald Volunteer House Banquet
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| Shad calling out the prize numbers. He is cool looking or what? Who has that much confidence at NINE years old LOLOLOL~!~ |
This morning I got up early and spent the whole day with Selah. She had a great day, got to spend an hour with therapist. She gave me some great ideas and she was so encouraging to us. She notes everything that Selah does and encourages us on all the progress she makes. she was VERY responsive today and that was really encouraging to me. I needed that. She did have a time when her heart rate went up for a few hours. She didn't have as high of a heart rate as she usually does & her blood pressure didn't go up too high but it did last for a few hours. She is starting to wear a "nose" on her trach. It is a covers her trach and works like a nose to filter air. It will help us not to have to use the humiderfer all the time once we get home with her. We are so blessed by the nursing staff here, they work with her trying to do everything they can to help her. The last few weeks we've had student nurses and they have been wonderful too. They seem to really care about the patients & the families also.
We are waiting to hear on our next step with Selah, please keep us in prayer and as always pray for Selah!
Radio Interview
Today Jon and I did a radio interview for the Ronald McD House's annual telethon in the spring. We have never done a radio show before, it was interesting. The man who interviewed us was a believer and had a story also...don't we all? Life is hard and every one's story is different but we all have or will have a story. He experienced the grace of God through his journey also. We could relate to the pain and we could also relate to the peace of God that carries us through!
This Wednesday makes NINE weeks since the accident....we are still praying for our Selah. we ask you to continue to pray for her also. Our life has not gone back to "normal" We are still in the same situation, still in the same room, still with a little girl in the hospital...she is better but not the same little girl that we had 9 weeks and 1 day ago...
Today the nurse did say that she saw Selah respond to her also, when she was wanted to get out of the chair. That was a great uplift to us! We have some GREAT nurses!!!! I'm so impressed by the nursing staff here at Strong's. Of course no one wants to be in the hospital but if you do, this is a good place to be!
We had a crazy day today, everything got out of whack, woke up late, the water was off here for some repairs, then the interview, so Jon went over and stayed with Selah this afternoon. I went and got Sarah's haircut and mine too. Sarah looks like a little Amish girl:) We have some Amish staying at the RMH and I think they think we are converting:) By the time we got back it was time to feed the kids supper and give baths, eyedrops and do teeth brushing! I didn't get to go to the hospital today so I'll get up early in the morning and go stay with Selah. We have to have one parent here with the kids so it makes things a bit more complicated. My good friend who was watching the kids has gone back to work:( So we spilt up our time with the kids. We try and keep things as "normal" as possible with the other kids and keep them on the same schedule as we would at home.
The weather has been crazy here! It has been super cold, in the 20's a few nights and then today it's warm and up in the 70's I had packed away all our summer clothes, of course LOL! We had hoped for snow:) The boys were really hoping we'd get some before we leave but I don't know if we will.
Well goodnight all and thanks for the prayers for our baby girl!
This Wednesday makes NINE weeks since the accident....we are still praying for our Selah. we ask you to continue to pray for her also. Our life has not gone back to "normal" We are still in the same situation, still in the same room, still with a little girl in the hospital...she is better but not the same little girl that we had 9 weeks and 1 day ago...
Today the nurse did say that she saw Selah respond to her also, when she was wanted to get out of the chair. That was a great uplift to us! We have some GREAT nurses!!!! I'm so impressed by the nursing staff here at Strong's. Of course no one wants to be in the hospital but if you do, this is a good place to be!
The weather has been crazy here! It has been super cold, in the 20's a few nights and then today it's warm and up in the 70's I had packed away all our summer clothes, of course LOL! We had hoped for snow:) The boys were really hoping we'd get some before we leave but I don't know if we will.
Well goodnight all and thanks for the prayers for our baby girl!
Tuesday, October 16, 2012
Waiting.....
We're just waiting on word on our next step.... still don't know all the details but hoping that things will work out for Selah to go to Lakeland Regional. LRMC will be having a multi disciplinary meeting on Friday to discuss her coming to them. Please pray that everything will be worked out for her. So many changes will be coming for out family soon. Being home will be a huge change for us after these past almost 10 weeks up here.
Selah seems to be more resting today although she paid attention to Jon this morning as he sang and talked to her. This afternoon she is just sleepy. She seems to be on a plateau as far as doing anything new and of course that worries me alot. Please pray that she is able to cough/gag and start moving her limbs. She was so sleepy with me, it just worries me! Please pray!!!!!!
There is alot rolling around in my head today, none of it too spiritual to be sure. Feeling down and rather alone in this fight for Selah. We want to see her get the best care, in a setting that we are comfortable with. No one will fight for your child but yourself but that gets hard. It's just a shame that things come with such a fight!!
Thinking that Friday will be 10 weeks since we left home....thankful that God has been with us during this time and that our family has been held in the palm of His hands. When I look back, it amazes me that our family has made it through. We are living in a small bedroom/bath in the RMH, our kids have just "rolled with the punches" we're making it work for us. Someone asked if we were homesick...I anaswered "Nope, my family is with me, I don't miss a house!" We've tried our best to keep things as normal as possible for them and thankfully it's working. But it is difficult to go through such a valley, in a place that is not home. We've been blessed by so many folks in the Rochester area to make us feel "at home" So with every difficulty, we've been blessed.....but it's been a hard walk.
So please pray for Selah and for us ...thank you!!!!
Selah seems to be more resting today although she paid attention to Jon this morning as he sang and talked to her. This afternoon she is just sleepy. She seems to be on a plateau as far as doing anything new and of course that worries me alot. Please pray that she is able to cough/gag and start moving her limbs. She was so sleepy with me, it just worries me! Please pray!!!!!!
There is alot rolling around in my head today, none of it too spiritual to be sure. Feeling down and rather alone in this fight for Selah. We want to see her get the best care, in a setting that we are comfortable with. No one will fight for your child but yourself but that gets hard. It's just a shame that things come with such a fight!!
Thinking that Friday will be 10 weeks since we left home....thankful that God has been with us during this time and that our family has been held in the palm of His hands. When I look back, it amazes me that our family has made it through. We are living in a small bedroom/bath in the RMH, our kids have just "rolled with the punches" we're making it work for us. Someone asked if we were homesick...I anaswered "Nope, my family is with me, I don't miss a house!" We've tried our best to keep things as normal as possible for them and thankfully it's working. But it is difficult to go through such a valley, in a place that is not home. We've been blessed by so many folks in the Rochester area to make us feel "at home" So with every difficulty, we've been blessed.....but it's been a hard walk.
So please pray for Selah and for us ...thank you!!!!
Monday, October 15, 2012
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