This has been a quiet day, Selah is doing fine, but she is still "off". her heart rate went up this afternoon but she didn't storm. Our nurse worked with her and he sat her up in bed and she calmed down. She got some extra PT today which was good for her. Tomorrow we see the Pulmologist and hopefully really get a good plan of action for her, in order to keep her out of the hospital for good!!!! I really hope this will be a good appointment and not a waste of time. If you have a special needs child, you know what I mean, MOST appointments with specialists are a waste of time and money. Honestly I've always felt our pediatrician could handle all of that for us so much better. I do know our peds office has been in contact with the pulmologist's office and I think that will help everyone to focus on what we need for Selah. And what we need is something, whether it is long term antibiotics or whatever to keep her out of the hospital and home where she belongs!
Steve had a dentist appointment to tighten his braces and it's right across the road from the mall.... And there is still a sale going on at Macy's...and I still had a coupon....and there were two more skorts that came home with me!!!!!!! Yes I have an addiction....the only time of year I can feed it is in the spring when the skorts come out. You see, there are only a few skorts made, and then they are all sold and by July, you won't be able to find one in a store...unless you get lucky and find one at a thrift store. So last year, I was too busy with buying things for the girls to buy myself any skorts....this year, I've made up for it! LOL but with the sale and coupons, they were only $13 each today!
This afternoon, I went through my closet yet again. I really believe when you buy something new, you need to get rid of something. So I tried on things, ironed things, folded & reorganized and put things in bags to give away. BTW, I like to iron....how werid is that?? Most of my clothes I buy at a thrift store, so it is not hard to part with something bought for $2 or so! I have "my style" the kind of clothes I feel comfy in and of course, SKORTS top the list! I love when I can find something at a thrift store that is "my style" and still looks nice. I'll only buy brand new or name brand things at a thrift store. I love having my closet really cleaned out. Everything is ironed and put together.....it just does my OCD self GOOD to have something in my life organized! I gave some things to our nurse who is working with his church and taking things to the tornado victims in Oklahoma.
Also today I got to go to the Nutrition S'Mart a health food/grocery store. They carry the BEST hummus in the world and it has NO oils in it. (we stay away from vegetable oils unless they are Expeller Pressed) I bought a few days supply LOL they also had a sale on chips..."healthy" chips....LOL we get this one type of chips made with Olive Oil and rosemary that we call "marijuana" chips because they are so addicting! Those chips with a Pepsi....HEAVEN HAHAHAHAHA! Forget the Pepsi....trying to be healthy is hard!
Shad has been finished with his 3rd grade work now for a week:) He finished up 3 weeks before our school lets out so I'm proud of him (and myself!) Steve will be working through the summer finishing up 11th grade and doing his Russian class. ( I told him to take Spanish but no....he had to go and pick a language that has its own alphabet! ) Actually I'm proud he is taking Russian. It's because he went to Ukraine and learned so much of the culture and of Russia too. Ukraine does have its own language but in our area, only Russian was spoken except in court, that was all in Ukraine. Our family feels a strong bond and love for Ukraine.
So a quiet day, everything is ok but I'm still worried about Selah. I'd like to be seeing her getting better quicker, I think in my gut I'm afraid we'll end up in the hospital still. Please continue praying for her and that our appointment tomorrow will give us some real solutions to this problem of getting sick every two weeks or so.
Please do not forget about our orphan of the month, we have raised $610 so far....I'd love to hit $1000 for her this month!!! That would go a long way in her adoption!!!
Thank you all for your prayers, giving and sweet comments to me. You really encourage me more than you know!!!
"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!
Thursday, May 23, 2013
Wednesday, May 22, 2013
Mall trip
Selah is doing ok, her heart rate is up just a bit overall BUT not storming. I bought her a probiotical for her to start taking in case it is just her tummy feeling bad with all the meds going in. No fever or throwing up and no storming so things are ok I'd just like to see her feeling better after being on medicine since Friday!
This afternoon I took the kids to get their haircut and go to the mall, fun times:) Sam loves getting his hair cut but if we touched his face near his bad eye, he'd flinch so it still must be painful. Steve got a really nice hair cut and his beard trimmed, now he won't frighten small children! Shad got everything shaved just like Sam and Sarah and I just got a trim. I'll do some pictures but the little ones are taking naps.
Then I found three pairs of SKORTS HALLELUJAH! And I ordered two other pairs that they didn't have in my size (they were too big whoohoo!) We all have our addictions.....but at least my addiction was on sale 50% and I had a coupon for another 20% and got free shipping:) If you don't know what a "skort" is...it is a skirt with attached shorts. It is the most comfortable and modest shorts/skirt you can find. Living in Florida, you tend to live in shorts. Skorts can be dressy or you can wear tennis shoes and a tshirt with them.... I love Skorts, with having kids, it's nice to know I'm not flashing anyone when I bend over LOL These were really good thick material and a little longer which is nice. I'm HAPPY:) I also got a badly needed pedicure and a 20 minute massage today....I feel very indulged! Hey maybe it was me that won the lottery LOL!
Last night I put on a crock pot full of chicken legs and boneless breasts to cook all night. This morning I had the broth to take off and save and now the chicken is baking with bbq sauce! Also got baked beans, green beans and mac & cheese cooking. That was so easy, meals around here have been hit or miss for the most part lately. I hate that, I'm used to cooking supper every night....I've got to get back on track! Some days I just don't focus good anymore.
When I had to wait at CVS Pharmacy for hours on Monday, I found a cookbook called "Fix It and Forget It" and it has all kinds of crock pot recipes. I'm trying several out tomorrow. For Christmas I got a 3 pot crock pot. It is long and has 3 crock pots that are side by side in the machine. My goal is to use it a couple of times a week. I also have a giant crock pot, a medium/Large one and a small one. I have NO excuse for not using them all the time. There were so many recipes in that book to try out so we are going to do so. Tomorrow night I am going to cook a wild chicken rice, seafood dip, and a Mexican beef/bean dip all in the crock pots. I do have to modify the recipes a bit to try and fit our healthier goals but it should be good. I'll let you know and share the recipe if it all turns out good. One thing I learned from that book was you could put in a completely frozen chicken or parts of chicken and let it cook all night on low and it will thaw and then cook....that was life changing LOL!
Thank you for your prayers for Selah and our family. Thank you for your kind support, I love the emails and comments I get that are so encouraging!!! Thanks!
This afternoon I took the kids to get their haircut and go to the mall, fun times:) Sam loves getting his hair cut but if we touched his face near his bad eye, he'd flinch so it still must be painful. Steve got a really nice hair cut and his beard trimmed, now he won't frighten small children! Shad got everything shaved just like Sam and Sarah and I just got a trim. I'll do some pictures but the little ones are taking naps.
Then I found three pairs of SKORTS HALLELUJAH! And I ordered two other pairs that they didn't have in my size (they were too big whoohoo!) We all have our addictions.....but at least my addiction was on sale 50% and I had a coupon for another 20% and got free shipping:) If you don't know what a "skort" is...it is a skirt with attached shorts. It is the most comfortable and modest shorts/skirt you can find. Living in Florida, you tend to live in shorts. Skorts can be dressy or you can wear tennis shoes and a tshirt with them.... I love Skorts, with having kids, it's nice to know I'm not flashing anyone when I bend over LOL These were really good thick material and a little longer which is nice. I'm HAPPY:) I also got a badly needed pedicure and a 20 minute massage today....I feel very indulged! Hey maybe it was me that won the lottery LOL!
Last night I put on a crock pot full of chicken legs and boneless breasts to cook all night. This morning I had the broth to take off and save and now the chicken is baking with bbq sauce! Also got baked beans, green beans and mac & cheese cooking. That was so easy, meals around here have been hit or miss for the most part lately. I hate that, I'm used to cooking supper every night....I've got to get back on track! Some days I just don't focus good anymore.
When I had to wait at CVS Pharmacy for hours on Monday, I found a cookbook called "Fix It and Forget It" and it has all kinds of crock pot recipes. I'm trying several out tomorrow. For Christmas I got a 3 pot crock pot. It is long and has 3 crock pots that are side by side in the machine. My goal is to use it a couple of times a week. I also have a giant crock pot, a medium/Large one and a small one. I have NO excuse for not using them all the time. There were so many recipes in that book to try out so we are going to do so. Tomorrow night I am going to cook a wild chicken rice, seafood dip, and a Mexican beef/bean dip all in the crock pots. I do have to modify the recipes a bit to try and fit our healthier goals but it should be good. I'll let you know and share the recipe if it all turns out good. One thing I learned from that book was you could put in a completely frozen chicken or parts of chicken and let it cook all night on low and it will thaw and then cook....that was life changing LOL!
Thank you for your prayers for Selah and our family. Thank you for your kind support, I love the emails and comments I get that are so encouraging!!! Thanks!
Tuesday, May 21, 2013
Tuesday update
Thanks so much for the sweet positive comments on here and emails I've gotten! You guys are great!!!! You get me all fired up! I don't need any of you hanging out with me at the hospital, we'd all get kicked out hahahaha!!! Thank you!
My heart is so heavy for the tragedy in Oklahoma....it's hard to grasp it.... Actually there is so much going on in the world in general and in my world (of my friends and family) heartaches, sicknesses, deaths....it seems like a time of great need. Just today there were so many needs among my friends, older parents sick and dying, siblings very sick, accidents, several families in the process of adoption have heard the child they were going for, has passed away or is very sick...one child just home 3 weeks passed away from her health issues.... so many sad hearts in this world.....the only thing I can think is that "God is near to the brokenhearted" and this world with all its heartache is NOT our home, we are just passing through....thank God this is not IT for the christian...we have an eternal Hope!
Today I took Selah to her neurologist's appointment. He sees Sam and is a very common sense doctor. He really just talked to us about things, nothing new, no med changes. He did really look at her eyes and feels there maybe some optic nerve damage but wants confirmation from an opthmologist, not that that really makes a big difference in anything we do with Selah. We talked about who Selah was before the accident and how that has to be taken into account. He seemed shocked at how delayed she was before hand.... It was sad in one sense...I felt he held back from being discouraging. He did say we may still see improvement but that the longer time goes on with no major improvement, the less chance of it happening. We've been told that many times so it's ok. We realize that if improvement doesn't happen significantly in the first few weeks....then there is little chance the child will be back to her "normal" self ever. Brain injury from a near drowning or loss of oxygen is the worst kind of brain injury. I have had people tell me about someone they know who had a car accident or whatever and had a brain injury and how they astonished the doctors...etc.... That does happen in some cases like that because the whole brain is not injured. With lack of oxygen the WHOLE brain is injured and it makes full recovery much more difficult. It's still sad to hear....and to tell the story again... I almost broke down, but I caught myself in time. I really hate to cry!
She hasn't stormed for over 24 hours now! The new med may be working!!! Our main day nurse gave notice today, she is taking a job at a facility nearer her home and less hours and more benefits.:( She is going to help me interview someone to take her place. It will be hard to replace her!
Next month I am going to my 30th year high school reunion....yes 30th! I have to say I am really excited:) I went to the 10th and it was not anything much to write home about....I missed the 20th altogether, I think we were going to Branson Missouri around the same time...but now thanks to Facebook, I've reconnected with old friends and feel much closer to many of them than I ever did in school! I think we have all gone through LIFE and are much more realer people than when we were in high school (at least I hope so LOL) I was not a "popular girl" I came from a a strange family situation (for my era, in a small town) and on top of that, we went to a Pentecostal church! We were poor but most everyone in town was pretty poor. It's funny, now I look back at folks I thought were "rich" and realize they weren't! No one had alot back then. People used to make fun of my glasses and freckles or that I wasn't allowed to wear pants for awhile... To me it's just funny now.
Growing up in a very small town, we were all pretty much together from kindergarten to 12th grade. You kinda knew everyone... so everyone has some kind of history with each other. We all have the same memories, same teachers, same elementary, junior high school and high school.... I left for college after I graduated and only went back a few summers so I really haven't had much contact with most of my classmates. I do have a BFF from my childhood, who I will always be close to and I get to spend a whole long weekend with her!!!! WOOHOO!!!!!!!! We haven't had more than a meal together in almost 10 years! We've stopped and met her for lunch or dinner when we've driven through Perry but that has been it! Thank God for telephones and emails! Growing up we were inseparable...in other words, I lived at her house:) Her parents put up with me and nurtured me. I loved being over at the Harris house....it was fun and full of love and laughter. We laughed alot...if you'd ever had told me back then we would see so little of each other as adults, it would have killed me! When you have a friend from your childhood, they really "get you" They knew you as a child, a teen, they knew the silly you and your family too. They often knew the dreams you had for the future.... It's really special to have a long time friend like I do and I am so thankful for Angela! I can't wait to spend time with her!!!! We've been close friends for 35 years and friends since childhood.
I'm looking forward to seeing others too. I think when you've lived half your life ( most of us will turn 48 this year) and gone through LIFE....it's kind of a survivor's meeting LOL... Who'd the heck ever thought we'd get this old??? Not me! What is weird, since I haven't seen many of my classmates, they are forever 17 years old in my mind....then I see them in pictures on FB and I think..."well they are not quite 17 anymore LOL" What unnerves me the most is seeing guys I had crushes on who have GRAY hair!!!!!!!!! (although I have to say I didn't hae that many crushes on guys in my grade! Ewwww Gross! LOL) But the grey hair is the oddest thing to me, it doesn't seem possible! That is what makes me feel old:)
It's going to be a good girls weekend:) Lots of laughs I'm sure!!! It gives me something to look forward to:) How much weight can I lose in a month??????
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So please keep praying for Selah.....sometimes I get more focused on the day to day, like getting her through this illness but I do pray daily for God to heal her and bring her all the way back to us!
My heart is so heavy for the tragedy in Oklahoma....it's hard to grasp it.... Actually there is so much going on in the world in general and in my world (of my friends and family) heartaches, sicknesses, deaths....it seems like a time of great need. Just today there were so many needs among my friends, older parents sick and dying, siblings very sick, accidents, several families in the process of adoption have heard the child they were going for, has passed away or is very sick...one child just home 3 weeks passed away from her health issues.... so many sad hearts in this world.....the only thing I can think is that "God is near to the brokenhearted" and this world with all its heartache is NOT our home, we are just passing through....thank God this is not IT for the christian...we have an eternal Hope!
Today I took Selah to her neurologist's appointment. He sees Sam and is a very common sense doctor. He really just talked to us about things, nothing new, no med changes. He did really look at her eyes and feels there maybe some optic nerve damage but wants confirmation from an opthmologist, not that that really makes a big difference in anything we do with Selah. We talked about who Selah was before the accident and how that has to be taken into account. He seemed shocked at how delayed she was before hand.... It was sad in one sense...I felt he held back from being discouraging. He did say we may still see improvement but that the longer time goes on with no major improvement, the less chance of it happening. We've been told that many times so it's ok. We realize that if improvement doesn't happen significantly in the first few weeks....then there is little chance the child will be back to her "normal" self ever. Brain injury from a near drowning or loss of oxygen is the worst kind of brain injury. I have had people tell me about someone they know who had a car accident or whatever and had a brain injury and how they astonished the doctors...etc.... That does happen in some cases like that because the whole brain is not injured. With lack of oxygen the WHOLE brain is injured and it makes full recovery much more difficult. It's still sad to hear....and to tell the story again... I almost broke down, but I caught myself in time. I really hate to cry!
She hasn't stormed for over 24 hours now! The new med may be working!!! Our main day nurse gave notice today, she is taking a job at a facility nearer her home and less hours and more benefits.:( She is going to help me interview someone to take her place. It will be hard to replace her!
Next month I am going to my 30th year high school reunion....yes 30th! I have to say I am really excited:) I went to the 10th and it was not anything much to write home about....I missed the 20th altogether, I think we were going to Branson Missouri around the same time...but now thanks to Facebook, I've reconnected with old friends and feel much closer to many of them than I ever did in school! I think we have all gone through LIFE and are much more realer people than when we were in high school (at least I hope so LOL) I was not a "popular girl" I came from a a strange family situation (for my era, in a small town) and on top of that, we went to a Pentecostal church! We were poor but most everyone in town was pretty poor. It's funny, now I look back at folks I thought were "rich" and realize they weren't! No one had alot back then. People used to make fun of my glasses and freckles or that I wasn't allowed to wear pants for awhile... To me it's just funny now.
Growing up in a very small town, we were all pretty much together from kindergarten to 12th grade. You kinda knew everyone... so everyone has some kind of history with each other. We all have the same memories, same teachers, same elementary, junior high school and high school.... I left for college after I graduated and only went back a few summers so I really haven't had much contact with most of my classmates. I do have a BFF from my childhood, who I will always be close to and I get to spend a whole long weekend with her!!!! WOOHOO!!!!!!!! We haven't had more than a meal together in almost 10 years! We've stopped and met her for lunch or dinner when we've driven through Perry but that has been it! Thank God for telephones and emails! Growing up we were inseparable...in other words, I lived at her house:) Her parents put up with me and nurtured me. I loved being over at the Harris house....it was fun and full of love and laughter. We laughed alot...if you'd ever had told me back then we would see so little of each other as adults, it would have killed me! When you have a friend from your childhood, they really "get you" They knew you as a child, a teen, they knew the silly you and your family too. They often knew the dreams you had for the future.... It's really special to have a long time friend like I do and I am so thankful for Angela! I can't wait to spend time with her!!!! We've been close friends for 35 years and friends since childhood.
I'm looking forward to seeing others too. I think when you've lived half your life ( most of us will turn 48 this year) and gone through LIFE....it's kind of a survivor's meeting LOL... Who'd the heck ever thought we'd get this old??? Not me! What is weird, since I haven't seen many of my classmates, they are forever 17 years old in my mind....then I see them in pictures on FB and I think..."well they are not quite 17 anymore LOL" What unnerves me the most is seeing guys I had crushes on who have GRAY hair!!!!!!!!! (although I have to say I didn't hae that many crushes on guys in my grade! Ewwww Gross! LOL) But the grey hair is the oddest thing to me, it doesn't seem possible! That is what makes me feel old:)
It's going to be a good girls weekend:) Lots of laughs I'm sure!!! It gives me something to look forward to:) How much weight can I lose in a month??????
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So please keep praying for Selah.....sometimes I get more focused on the day to day, like getting her through this illness but I do pray daily for God to heal her and bring her all the way back to us!
Monday, May 20, 2013
Beyond Frustrated!
The best laid plans of mice and men.....
Well I had plans for today but they all got shelved....
Checked with our pediatrician and Selah grew THREE bugs out of of trach sample. Soooooo.....as I was on my way to the dealership to get some stuff done on my van, I turned around.....
He wanted her to be on Cipro or she had to go to the hospital for an IV. Since we had gone through it with Cipro already, I talked to the pharmacist about it and he actually called the manufacturer and found out that Cipro can't be given through a gtube because it does not interact with the body correctly that way. Evidently it needs to work all the way through the digestive system to be effective. So our doctor put her on another drug, it's new and our pharmacy didn't have it.....but one 25 miles away did. So I drove through a storm to get it. I called the nurse and Selah was having her own "storm" UGH!
We are hoping this medicine will work and clean her out. I am frustrated.....if you remember JUST TWO weeks ago, she was released from St Joe's...the doctor basically did it against my wishes. Since that was her THIRD admission in just six weeks, and each time she tested positive for the same stinking thing....I did NOT think just a little amoxicillin was going to keep her healthy....so now only one week after finishing the bottle, she is sick for the FOURTH time since the first of April. To say I'm ticked off would be an understatement!!!!! I can assure you, there are quite a few adjectives that are in my mind as I am typing this that are not wholesome.....nor am I adding them....
I'm MAD because there is such a lack of COMMON SENSE in the medical community.....I saw this with Sam when he was little and I knew I'd see it with Selah. In my opinion it is worse in the South (in Florida) than up North. I could be wrong but having experienced health care in NY with Sam and Selah....I can at least say in our situation that has been what we have seen.
IF the doctors had listened to me when Selah was admitted the SECOND time for the same thing...maybe this would have cleared up. Maybe if they'd listened to me at the THIRD admission for the same thing, maybe this would have been cleared up....but NO! They would not listen to me OR to Selah's regular nurses (each time they went with us when she was admitted) The doctors were too busy either trying to turn it into something more than an infection (in one case calling in both neuro and cardiology twice-because of the storming that happens when she is sick- and that has been documented) or in the other case acting like I was making a mountain out of a mole hill....
So common sense does not prevail and who suffers??? My little girl...not the doctors who made stupid decisions and wouldn't listen to me but this little girl and that is what makes me MAD!
So she has been sick since Thursday night, it keeps her from progressing, she feels bad and she has neurological storms and has to take more meds to keep her calm. Now if this new antibiotic doesn't work, then she will be admitted once again. I can assure you THIS time someone will listen to me. Selah HATES the hospital and she regresses just being in there! She stiffens up, she gets jumpy and has many more storms.
I've thought about IF she has to go in taking her to All Children's but then we are further from home and having to start all over again. To be honest, Sam was in there several times and each time something happened to him that was NOT good! So it is not really where I want to go with her and they have residents and interns which just annoy me to no end.... There is a hospital in Orlando called Neumores but we tried to get them to take Selah so we could transfer her down here from NY and ALL they wanted to talk to me about on a conference call was their "nursing homes for children" As you can imagine I told them quite bluntly they were wasting my time and their time.... It was not a pleasant conversation. So I have no big hope for them either.
I'm sure I sound like a WITCH and will probably get a few emails telling me how nasty I am.... well I can promise you, you ain't seen nothing till you see me fighting for my child. I am not ashamed of it, I know God has given me wisdom (but for some reason, absolutely NO Tact) and I go with my instincts. I am seldom wrong about things that I feel in my gut. I've known since Selah's first admission with this crud that she needed something strong to get rid of it. I should have pushed harder this last time but I didn't. As it was, they had a social worker talk to me about their "discharge plans" I believe they did it to try and intimidate me which did not work. They did not threaten me in any way, but there was the feeling that I was a "problem mom" who thought I knew more than the doctor. Which I did.... We did want her home and felt she was more upset being in the hospital and hoped that if she got sick again we could manage it at home.
It's not like I'm home with her alone, we have 24 hour nursing, two different shifts a day so medical professionals are taking care of her and they could tell if she started to take a turn for the worse. Plus they are only working with Selah and they know her, they know her normals and what is not normal. But amazing no one wants to listen to them either!
We have a good pediatrician but once she is admitted, he is out of the picture until she is released. That is how it goes..... If we can keep her out of the hospital, she has an appointment on Friday with a pulmonogist. Our pediatrician wanted her to see him so maybe she can be put on a long term antibiotic so we can get her well, then work her off the trach and hopefully be done with it! Alot of kids get infections in their trachs no matter how clean things are kept, it is an opening in the body that doesn't have any natural defenses. So maybe that will be the answer for her.
So I am beyond frustrated! It would be easy for me to just put her in the hospital and let them deal with all the ups and downs of her being sick. We can't be there all the time, so I wouldn't have the minute to minute worry about her. Heck it gives us a "break" BUT it is not about us! We want to do what is best for her and she just freaks out in the hospital plus being in the hospital puts you at risk for so many more germs!
What should have happened at her last admission - the THIRD one for the same thing- was she should have been placed on IV antibiotics and sent home. I already had cleared it with the home health agency, it could have been done. Then the antibiotic would have been strong enough to totally clear out her system. The first doctor she had agreed with me, but then before the process could be started, a new doctor rotated in and called in several specialists (for no NEW reason) and once she was cleared by them....(for cardiac and neurology) he felt she was fine and should go home WITHOUT the IV antibiotics. He said amoxicillen would be enough....yeah right....
So this time IF she does end up having to go to the hospital....I can assure you she won't come home till she either has a full course of IV antibiotics OR they send her home on it......
Ok enough of my ranting....sorry this is just beyond frustrating to me! Just be glad you can click off my blog LOL!!!!
Please pray this new medicine will kill all three bugs and help her to recover!!!!!!
And for the ones of you who thought I was some spiritual giant....you may have changed your mind after this blog! Sorry but I hate when I have to deal with foolishness, when it has to do with my child! Maybe I don't handle it the right way and probably do not handle my anger very well either .... But I can tell you I love my little ones, and will see that they get the best care possible!
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While I was hanging out in CVS for hours..... I did find a toy for Sarah. Sarah is not a big toy player but I thought she might like this and she did very much! She definelty can see light! I love she actually starts holding it, that is big for her!
Well I had plans for today but they all got shelved....
Checked with our pediatrician and Selah grew THREE bugs out of of trach sample. Soooooo.....as I was on my way to the dealership to get some stuff done on my van, I turned around.....
He wanted her to be on Cipro or she had to go to the hospital for an IV. Since we had gone through it with Cipro already, I talked to the pharmacist about it and he actually called the manufacturer and found out that Cipro can't be given through a gtube because it does not interact with the body correctly that way. Evidently it needs to work all the way through the digestive system to be effective. So our doctor put her on another drug, it's new and our pharmacy didn't have it.....but one 25 miles away did. So I drove through a storm to get it. I called the nurse and Selah was having her own "storm" UGH!
We are hoping this medicine will work and clean her out. I am frustrated.....if you remember JUST TWO weeks ago, she was released from St Joe's...the doctor basically did it against my wishes. Since that was her THIRD admission in just six weeks, and each time she tested positive for the same stinking thing....I did NOT think just a little amoxicillin was going to keep her healthy....so now only one week after finishing the bottle, she is sick for the FOURTH time since the first of April. To say I'm ticked off would be an understatement!!!!! I can assure you, there are quite a few adjectives that are in my mind as I am typing this that are not wholesome.....nor am I adding them....
I'm MAD because there is such a lack of COMMON SENSE in the medical community.....I saw this with Sam when he was little and I knew I'd see it with Selah. In my opinion it is worse in the South (in Florida) than up North. I could be wrong but having experienced health care in NY with Sam and Selah....I can at least say in our situation that has been what we have seen.
IF the doctors had listened to me when Selah was admitted the SECOND time for the same thing...maybe this would have cleared up. Maybe if they'd listened to me at the THIRD admission for the same thing, maybe this would have been cleared up....but NO! They would not listen to me OR to Selah's regular nurses (each time they went with us when she was admitted) The doctors were too busy either trying to turn it into something more than an infection (in one case calling in both neuro and cardiology twice-because of the storming that happens when she is sick- and that has been documented) or in the other case acting like I was making a mountain out of a mole hill....
So common sense does not prevail and who suffers??? My little girl...not the doctors who made stupid decisions and wouldn't listen to me but this little girl and that is what makes me MAD!
So she has been sick since Thursday night, it keeps her from progressing, she feels bad and she has neurological storms and has to take more meds to keep her calm. Now if this new antibiotic doesn't work, then she will be admitted once again. I can assure you THIS time someone will listen to me. Selah HATES the hospital and she regresses just being in there! She stiffens up, she gets jumpy and has many more storms.
I've thought about IF she has to go in taking her to All Children's but then we are further from home and having to start all over again. To be honest, Sam was in there several times and each time something happened to him that was NOT good! So it is not really where I want to go with her and they have residents and interns which just annoy me to no end.... There is a hospital in Orlando called Neumores but we tried to get them to take Selah so we could transfer her down here from NY and ALL they wanted to talk to me about on a conference call was their "nursing homes for children" As you can imagine I told them quite bluntly they were wasting my time and their time.... It was not a pleasant conversation. So I have no big hope for them either.
I'm sure I sound like a WITCH and will probably get a few emails telling me how nasty I am.... well I can promise you, you ain't seen nothing till you see me fighting for my child. I am not ashamed of it, I know God has given me wisdom (but for some reason, absolutely NO Tact) and I go with my instincts. I am seldom wrong about things that I feel in my gut. I've known since Selah's first admission with this crud that she needed something strong to get rid of it. I should have pushed harder this last time but I didn't. As it was, they had a social worker talk to me about their "discharge plans" I believe they did it to try and intimidate me which did not work. They did not threaten me in any way, but there was the feeling that I was a "problem mom" who thought I knew more than the doctor. Which I did.... We did want her home and felt she was more upset being in the hospital and hoped that if she got sick again we could manage it at home.
It's not like I'm home with her alone, we have 24 hour nursing, two different shifts a day so medical professionals are taking care of her and they could tell if she started to take a turn for the worse. Plus they are only working with Selah and they know her, they know her normals and what is not normal. But amazing no one wants to listen to them either!
We have a good pediatrician but once she is admitted, he is out of the picture until she is released. That is how it goes..... If we can keep her out of the hospital, she has an appointment on Friday with a pulmonogist. Our pediatrician wanted her to see him so maybe she can be put on a long term antibiotic so we can get her well, then work her off the trach and hopefully be done with it! Alot of kids get infections in their trachs no matter how clean things are kept, it is an opening in the body that doesn't have any natural defenses. So maybe that will be the answer for her.
So I am beyond frustrated! It would be easy for me to just put her in the hospital and let them deal with all the ups and downs of her being sick. We can't be there all the time, so I wouldn't have the minute to minute worry about her. Heck it gives us a "break" BUT it is not about us! We want to do what is best for her and she just freaks out in the hospital plus being in the hospital puts you at risk for so many more germs!
What should have happened at her last admission - the THIRD one for the same thing- was she should have been placed on IV antibiotics and sent home. I already had cleared it with the home health agency, it could have been done. Then the antibiotic would have been strong enough to totally clear out her system. The first doctor she had agreed with me, but then before the process could be started, a new doctor rotated in and called in several specialists (for no NEW reason) and once she was cleared by them....(for cardiac and neurology) he felt she was fine and should go home WITHOUT the IV antibiotics. He said amoxicillen would be enough....yeah right....
So this time IF she does end up having to go to the hospital....I can assure you she won't come home till she either has a full course of IV antibiotics OR they send her home on it......
Ok enough of my ranting....sorry this is just beyond frustrating to me! Just be glad you can click off my blog LOL!!!!
Please pray this new medicine will kill all three bugs and help her to recover!!!!!!
And for the ones of you who thought I was some spiritual giant....you may have changed your mind after this blog! Sorry but I hate when I have to deal with foolishness, when it has to do with my child! Maybe I don't handle it the right way and probably do not handle my anger very well either .... But I can tell you I love my little ones, and will see that they get the best care possible!
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While I was hanging out in CVS for hours..... I did find a toy for Sarah. Sarah is not a big toy player but I thought she might like this and she did very much! She definelty can see light! I love she actually starts holding it, that is big for her!
for some reason, I have always loved Sarah's little hands, I noticed them on all her orphange pictures we saw and I still love her tiny little hands. I really love to see them holding a toy:)
what a sweet little girl she is, with a soft smile for everything.
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Sunday, May 19, 2013
It wasn't me.... Local Special Needs Ministry
Yes I live in Zephyrhills Fl and yes that was MY Publix but NO I did not win the Power ball lottery.....nor did anyone admit to it at church! I am STILL hoping that it was someone who knows and likes me LOL! I did find out the average age in Zhills is 49 years old.....and we only have 13,000 residents....it's hysterical to see the store I shop at weekly on the every national news channel! It's funny to learn all these little things about our town on National TV!
Can you imagine me with almost $600 million dollars? What would I do? You know I would work on emptying out as many orphanages as I could...I'd be busy funding families who were adopting! One of the big factors in adopting is the finances or the lack of finances... I'd be sponsoring kids who did not have a family come for them. I'd give to so many mission projects....when you go to Bible College you end up with alot of friends who are missionaries and they all, always need money! I'd fund eye research and set up a foundation for families to come to the US for eye surgery....in general I'd do alot of the things I'm doing NOW but on a much grander scale!
Wouldn't that be fun?????? But it didn't happen:(
In honor of no one at church winning the lottery, I requested the old hymn "Mansion Over the Hillside" since that is the only mansion I'll ever have. We were all laughing about it good naturally but we should always remind ourselves of eternal things...ALL this world will one day pass away. (btw I do not know if anyone actually played the lottery....just that no one won it LOL)
http://www.youtube.com/watch?v=YfZ3qyYnzJ0
You can watch the song sang by the Gaither's.... Love this old song!
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Today after church Sam was quite annoyed with waiting to leave to go eat!!
Can you imagine me with almost $600 million dollars? What would I do? You know I would work on emptying out as many orphanages as I could...I'd be busy funding families who were adopting! One of the big factors in adopting is the finances or the lack of finances... I'd be sponsoring kids who did not have a family come for them. I'd give to so many mission projects....when you go to Bible College you end up with alot of friends who are missionaries and they all, always need money! I'd fund eye research and set up a foundation for families to come to the US for eye surgery....in general I'd do alot of the things I'm doing NOW but on a much grander scale!
Wouldn't that be fun?????? But it didn't happen:(
In honor of no one at church winning the lottery, I requested the old hymn "Mansion Over the Hillside" since that is the only mansion I'll ever have. We were all laughing about it good naturally but we should always remind ourselves of eternal things...ALL this world will one day pass away. (btw I do not know if anyone actually played the lottery....just that no one won it LOL)
http://www.youtube.com/watch?v=YfZ3qyYnzJ0
You can watch the song sang by the Gaither's.... Love this old song!
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Today after church Sam was quite annoyed with waiting to leave to go eat!!
he wanted Shad, Sarah and Steve to "come on"
We waited for Selah to get her breathing treatment
Finally out to the van!
Selah did ok last night. She actually slept from about 9pm till 5:30 am but then had a small storm. She recovered within a matter of minutes and was alert all morning. We took her to church and she was moving her head around and again bringing her head back up by herself some.
However this afternoon, her heart rate is up higher and not too responsive to the meds. She is border line with it. It seems like if we sit her up in bed, and bend her at the waist, it helps her relax and her heart rate will go down. She is a bit red and her temp is around 99 F. It is just so worrying. We know we are doing everything they'd do at the hospital and she has had every test the hospital would run and she is on a strong antibiotic. This just has to run its course for her to get better. I thought by today she'd be ok. Very thankful for our day nurse and our night nurse! If we didn't have nursing, she'd be in the hospital for sure. I wouldnt' be comfortable dealing with this on my own!
Please keep Selah in your prayers and Sam too, he is acting like his bad eye is bothering him again. It's been tearing up some and he has been a bit grumpy!
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FYI
Our church is in the process of starting some new ministries. One that we want to start is a ministry to Special needs kids & adults and their families.
We know many families do not feel their child with special needs is accepted in many churches. In visiting churches we have felt the same thing. God forbid if you take the child to the nursery, the workers act like they have no idea how to handle the child, even if you stay with them or they ask too many probing questions. We've often gotten strange looks in various churches or conventions....it does not make us very happy! In fact I get very sarcastic and angry at times. SO.....knowing there are other families facing the same thing, we want our church to be a place where the children and families are welcomed.
Through a process of many things and situations, Jon & I have come to a belief that it is best for children to be in church with their families and not sent off to a "children's church" We base this on research on why our young adults turn away from their faith. In the research we have read, it seems to point to young people not feeling connected to their church. And that often points to the practice of sending kids to children 's church, then youth....it disconnects the family. This practice of splitting the family up during worship is relatively new (since the 70's) and since its advent, the rate of young adults leaving the church has just skyrocketed...coincidence? We think NOT!
So to start a ministry to special needs families, it takes us some time and probably needing to be flexible with how that will work and be done. Some children and adults with special needs may need their own space. Usually my children sit through the service with no issues but today Sarah could not be quiet. She kept making her happy noises....on the top of her lungs:) I removed her to the church office so I could still listen and so could the rest of the congregation:) So we are not sure how this all will work but it is something we'd like to do. If you live in our area and are interested in either working in this type of ministry or if you have a family member who could benefit from this, please feel free to contact the church at 352 567 6208. We'd also like to start a support group for families.
Saturday, May 18, 2013
Afternoon update
Selah lifted her head by herself today 2x! She has just been so busy moving her head and sitting straight up. Sometimes her head will slump but she is picking it back up on her own. The nurse saw her do it first and Jon & I came in to talk to her and she did it for us! I think we scared her we were so loud!!!!! YEAH SELAH! Just like a baby, head control is very important. If she can gain full head control, that will be wonderful!
Selah and mommy
Daddy and Selah. She always responds to him
In spite of not feeling good, she is doing some great things physically. Lots of good movement, what the therapists call "purposeful movement" not just a jerk or a strange movement.
But after all this good stuff she had a small "storm" but she calmed down quickly. She is doing ok, for her situation. If we hadn't gone to our doctor yesterday and got her on antibiotics, we will be in the hospital today for sure! We will be so happy if we can get her through this at home and get her well!
Sam trying to crawl back in his crib after a big lunch LOL he is still all about taking an afternoon nap!
For lunch I cooked a big Mexican food meal, then begged Steve to go with me to Walmart as I had to get some big things and I didn't want to have to be picking all that stuff up. We stopped to get gas and saw a big tree frog on the front of my van! Evidently he had gone to Walmart with us. Steve helped me capture him and we evidently got him into a coffee cup (it was quite a production the frog was not cooperative with me trying to save his life!) and brought him back home so he can live out his days in my jasmine bush LOL
So keep praying for my little girl...thank you!
Quick Morning Update
Selah had an ok night. She slept from 10 pm till about 2am. Then she was mostly up. Her heart rate was up and she had to be suctioned frequently. She wasn't setting off alarms but was over 110 most of the night. Normally she only needs suction about once a shift (12 hours) So something is going on with her. But we all feel we are on top of it! This morning her heart rate is in the 90's and she is up in her wheelchair. She looks better, no more red and runny eyes and her cheeks aren't flushed. Her temp did read right at 99.1 but that is not too bad, not really considered a temp. So we are watching her. Our monk nurse is here and he is always alot of fun. He has told her "no hospital!" She is just acting more normal in the last couple of hours and now she has 3 doses of the antibiotic in her so it should be doing its job!
Thanks for your prayers and kind comments and emails!
Here is some pictures of Steve hard at work this morning mowing the church! he is such a big help:)
Thanks for your prayers and kind comments and emails!
Here is some pictures of Steve hard at work this morning mowing the church! he is such a big help:)
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