We have now been home 11 weeks.
Complete lifestyle change. And even though it will get better from here, things are still permanently changed.
I can't look at the entire picture all at once as it's overwhelming. I have to take it day by day sometimes hour by hour.
I don't know what's next and sometimes I don't have the answer. But I have to keep going. I don't get sick days, hurt days, simply taking off for pleasure, all of that is gone. I've had to give up work for the time being in order to do this full time. And for now there is no break, not even for an hour. It's constant.
Everything I had in me was tested early on, so now I feel more confident with what I am doing. Now that Ricky has come so very far and needs very few medical things done to him, it's eased up some.
Still have hard nights where I am up all night and day.
Empathy
That's the key
My position is bad. I couldn't imagine being in his shoes.
What keeps me going........
We will get through this like we have everything else for the past 24 years we just need help from our friends and family with this kind of trauma. It's beyond anything one person can do.
People call me superwoman, a saint, an angel...... I'm none of those. This is what I am supposed to do. Ricky took care of me for 24 years and now it's time for me to take care of him.
It's difficult on both of us emotionally... A lot of late night talks.
There's grief as our entire lives have changed and some things we won't be able to do anymore. Hard to accept at times. Cannot dwell have to just keep going.
Staying positive and having a lot of support from family and friends is what has gotten us this far. Thank you everyone for all of your help. We appreciate you all!! xoxoxo
Monday, July 25, 2016
Wednesday, July 6, 2016
Never ceases to amaze me!
Wow ~ not sure where to start since my last post.
I could probably touch on each aspect of it and it would turn into a book.
Primary care physician appointment was awful. It wasn't transportations fault either. I've never had a four hour doctors visit where the doctor spent a total of about 20 minutes with me. And he has a spinal cord injury!! My doctor spends 30 minutes with me and I have an anxiety disorder not a SCI.
Not going to touch on all of the details and dwell, have to move on and get him in with my doctor so he can get the right care.
Second appt with his lung doctor went excellent! He really doesn't need to see her anymore but she's keeping us until we can get out of that awful Gainesville system. 🙏
She was also one of his doctors in the hospital and she knows him. Thankful for that.
Today he had occupational therapy and physical therapy. He exceeded each ones expectations. PT finally confirmed that his injury is incomplete as he has sensation below the waist. 👏🙏
Issue is the wheelchair now. Was ordered nine weeks ago said six weeks it would be here...... It's not here yet. Another long story.
We still have rough days and nights because he likes to stay awake and fight all of his meds in order to talk non stop for three or four days. Exhausting for me.
I told his lung doctor and she prescribed what worked on him in the hospital.
He's finally not fighting it. He has to have rest in order to heal. And as he says he's not one to rest. So this has been a tough process already. And it's just the beginning.
One positive thing he said after the last therapist left was "I'm excited about our new journey"
Made me smile 😊
Thank you again to everyone for all of your support. Speechless and there's not enough words to express my thanks to all of you! We love you ❤️❤️❤️❤️ xoxo
I could probably touch on each aspect of it and it would turn into a book.
Primary care physician appointment was awful. It wasn't transportations fault either. I've never had a four hour doctors visit where the doctor spent a total of about 20 minutes with me. And he has a spinal cord injury!! My doctor spends 30 minutes with me and I have an anxiety disorder not a SCI.
Not going to touch on all of the details and dwell, have to move on and get him in with my doctor so he can get the right care.
Second appt with his lung doctor went excellent! He really doesn't need to see her anymore but she's keeping us until we can get out of that awful Gainesville system. 🙏
She was also one of his doctors in the hospital and she knows him. Thankful for that.
Today he had occupational therapy and physical therapy. He exceeded each ones expectations. PT finally confirmed that his injury is incomplete as he has sensation below the waist. 👏🙏
Issue is the wheelchair now. Was ordered nine weeks ago said six weeks it would be here...... It's not here yet. Another long story.
We still have rough days and nights because he likes to stay awake and fight all of his meds in order to talk non stop for three or four days. Exhausting for me.
I told his lung doctor and she prescribed what worked on him in the hospital.
He's finally not fighting it. He has to have rest in order to heal. And as he says he's not one to rest. So this has been a tough process already. And it's just the beginning.
One positive thing he said after the last therapist left was "I'm excited about our new journey"
Made me smile 😊
Thank you again to everyone for all of your support. Speechless and there's not enough words to express my thanks to all of you! We love you ❤️❤️❤️❤️ xoxo
Tuesday, June 28, 2016
Busy weekend! 💜
Wow! What a weekend! Ricky had plenty of visitors this weekend. Including his daughter and new grandbaby Hatch!
Best baby ever. So chill! Love him to death already!
Thanks Mom for coming by and bringing more supplies and some soft food for Ricky to eat. That will help him a lot!
Special thanks to my moms neighbors Frank and Judy as their loving donations have helped immensely!
Thanks to my moms friend Lynda for contributing to our cause. Words can't express our appreciation.
Thanks to my brother for calling every month to inquire about my bills and take some of that load off of me 🙏
Thank you so much Brandi for guiding me through this process and for STILL helping me advocate for Ricky's medical care.
Also my Aunt Janis and Julee for the monetary support, support with supplies and of course emotional support! You guys have been great!
Thanks Debbie (with Premier) for your donation it will help me greatly! You're one of a kind!
Thanks Michelle for contacting the angels group and for all of the support I have received from them! And thank you for getting my grandbaby a gift. I so want to spoil this baby and I don't have the means or the way right now. Thanks to my mother for that also and all of the diapers you brought for Hatch! He will need them 😉😉
Thank you to everyone who has donated to his go fund me account so far! He will need additional medical supplies for a long while that insurance will not cover and this will help me pay for it.
Thank you Andrea and Robby for making the trip here so Ricky could meet his new grandson! What an awesomely memorable visit! (Thanks for the techy gadget for Ricky too! It will help him a lot down the road)
After having baby love all weekend and all of the outpouring of love from everyone, I'm overwhelmed with happiness for a change!
Still have to continue to fight for Ricky's care but this will help me survive and take care of Ricky until he's has gotten a lot better.
Ricky continues to improve daily and I see all of the baby steps he is making on his own I can't imagine what he could do with therapy!!! He would probably be walking by now he's so determined.
He just wants to get up out of bed. Now the hold up is his chair which has not been delivered.
He is off of bed rest so PT and OT should start coming out but kind of need his chair for sitting up purposes....smh @ this system I am dealing with. The frustration continues and I don't expect it to let up any time soon 😞
I really miss having a life but if I have to give it up for a few years to get Ricky back to full health then it is more than worth it!
I have my down days and my up days, as does he. If he can keep going so can I! Rolling with it as always but have my work cut out for me this week starting with a doctors appointment on Monday with his primary care physician. I so hope this goes well 🙏🙏. Especially with transport as I had to use the company that is not reliable to transport him this time. Love med port and wish they could take us everywhere. But they can't.... I just have to call and see if they "have a contract with the facility" before I can choose companies. Dis like using the one I'm using Monday just hope we don't get left there for four hours again. That was not fun.
Oh yeah I have a sitter for next week so no worries about that anymore! I can get some things done on the outside world thanks to my mom and nephews!
Some things pop up that are needed and unexpected like I need a bigger AC unit for the room we stay in, the one we have is too small and with this heat it just is not cutting it so I'll need to buy a new one soon. These donations will all be going to help Ricky's progress, keep him clean and comfortable, possibly keep me sane, and get him back to full health.
I have written some thank you cards, I have mailed some, and some I have yet to write but just know everyone they are coming as I greatly appreciate everyone's help because I cannot do this alone!!! 💜 xoxoxo
Ricky's donation page:
https://www.gofundme.com/2a4dvu4
Best baby ever. So chill! Love him to death already!
Thanks Mom for coming by and bringing more supplies and some soft food for Ricky to eat. That will help him a lot!
Special thanks to my moms neighbors Frank and Judy as their loving donations have helped immensely!
Thanks to my moms friend Lynda for contributing to our cause. Words can't express our appreciation.
Thanks to my brother for calling every month to inquire about my bills and take some of that load off of me 🙏
Thank you so much Brandi for guiding me through this process and for STILL helping me advocate for Ricky's medical care.
Also my Aunt Janis and Julee for the monetary support, support with supplies and of course emotional support! You guys have been great!
Thanks Debbie (with Premier) for your donation it will help me greatly! You're one of a kind!
Thanks Michelle for contacting the angels group and for all of the support I have received from them! And thank you for getting my grandbaby a gift. I so want to spoil this baby and I don't have the means or the way right now. Thanks to my mother for that also and all of the diapers you brought for Hatch! He will need them 😉😉
Thank you to everyone who has donated to his go fund me account so far! He will need additional medical supplies for a long while that insurance will not cover and this will help me pay for it.
Thank you Andrea and Robby for making the trip here so Ricky could meet his new grandson! What an awesomely memorable visit! (Thanks for the techy gadget for Ricky too! It will help him a lot down the road)
After having baby love all weekend and all of the outpouring of love from everyone, I'm overwhelmed with happiness for a change!
Still have to continue to fight for Ricky's care but this will help me survive and take care of Ricky until he's has gotten a lot better.
Ricky continues to improve daily and I see all of the baby steps he is making on his own I can't imagine what he could do with therapy!!! He would probably be walking by now he's so determined.
He just wants to get up out of bed. Now the hold up is his chair which has not been delivered.
He is off of bed rest so PT and OT should start coming out but kind of need his chair for sitting up purposes....smh @ this system I am dealing with. The frustration continues and I don't expect it to let up any time soon 😞
I really miss having a life but if I have to give it up for a few years to get Ricky back to full health then it is more than worth it!
I have my down days and my up days, as does he. If he can keep going so can I! Rolling with it as always but have my work cut out for me this week starting with a doctors appointment on Monday with his primary care physician. I so hope this goes well 🙏🙏. Especially with transport as I had to use the company that is not reliable to transport him this time. Love med port and wish they could take us everywhere. But they can't.... I just have to call and see if they "have a contract with the facility" before I can choose companies. Dis like using the one I'm using Monday just hope we don't get left there for four hours again. That was not fun.
Oh yeah I have a sitter for next week so no worries about that anymore! I can get some things done on the outside world thanks to my mom and nephews!
Some things pop up that are needed and unexpected like I need a bigger AC unit for the room we stay in, the one we have is too small and with this heat it just is not cutting it so I'll need to buy a new one soon. These donations will all be going to help Ricky's progress, keep him clean and comfortable, possibly keep me sane, and get him back to full health.
I have written some thank you cards, I have mailed some, and some I have yet to write but just know everyone they are coming as I greatly appreciate everyone's help because I cannot do this alone!!! 💜 xoxoxo
Ricky's donation page:
https://www.gofundme.com/2a4dvu4
Sunday, June 26, 2016
No sleep! 😱😱😱😱😱
Ugh two hours of sleep last night. I will be a zombie today...
Ricky's stubbornness kept us both awake all night.
I have no idea how someone fights sleep over medication. Beyond me but he does. Then it becomes an awful night of imaginary construction work and planning various things throughout the night. 😞
So up at 5:30am to feed him and give him meds and decided to knock out a few loads of laundry for the day too! Now I have to lay back down or I won't make it through the day! Love weekends....not!!!
This has to get better from here! I can't lose my hope or faith this early on.
So I will keep going and advocate for Ricky's health and quality of life as I have been doing.
Things will get better !!!! 🙏🙏🙏💜💜💜
Ricky's stubbornness kept us both awake all night.
I have no idea how someone fights sleep over medication. Beyond me but he does. Then it becomes an awful night of imaginary construction work and planning various things throughout the night. 😞
So up at 5:30am to feed him and give him meds and decided to knock out a few loads of laundry for the day too! Now I have to lay back down or I won't make it through the day! Love weekends....not!!!
This has to get better from here! I can't lose my hope or faith this early on.
So I will keep going and advocate for Ricky's health and quality of life as I have been doing.
Things will get better !!!! 🙏🙏🙏💜💜💜
Friday, June 24, 2016
Life can change in an instant! Cherish your loved ones ❤️❤️
My big heart and sixth sense are my nemesis right now. 💔
This is not only tearing me apart inside but it is still hard for me to accept. That my life is over. Done.
I never had kids so I don't know what this is like & it scares me to death.
I've been home for almost seven weeks and I haven't been out of a five mile radius since then.
I wasn't thinking of myself when this happened .. Who does?
Now it's sinking in. I really have no life now. Everything is centered around Ricky (for good reason) and I've slowly disappeared into the background.
I can be both. An introvert and an extrovert. But I like to choose. Not be told what to do. And at the moment I am being forced because I have no other choice.
You can't have friends because you can't keep up your end of the relationship. You can't go anywhere therefore no socializing at all.
I like privacy but didn't want to be a hermit....how I feel right now.
Plus the inevitable happened and I strained my back. Has to be from leaning over ... Normally how I hurt it... That's all we need.
We have no choice except for to roll with it. And that's what we do.
Oh! I desperately need someone to sit with Ricky for like an hour or two a week so I can get everything done in the "outside world"..... I don't need much time away and I wouldn't ever leave anyone with medical things to do on him. All you would have to do is talk to him if he's Chatty Cathy or he sleeps a lot so you can even take a nap.
Anyway let me know if anyone can help me out text me, email me or FB message me. Thanks in advance.
My list keeps getting longer 😱......
As always thanks everyone for the support and the donations. Both are much needed right now, & there aren't enough words to express our appreciation! 😍❤️❤️❤️❤️ xoxoxo
https://www.gofundme.com/2a4dvu4
To help follow the link above. And please feel free to share the link. I desperately need the help right now. 😘😘
Thank all of youuuuuuuuu!! 💜💜💜 xoxo
This is not only tearing me apart inside but it is still hard for me to accept. That my life is over. Done.
I never had kids so I don't know what this is like & it scares me to death.
I've been home for almost seven weeks and I haven't been out of a five mile radius since then.
I wasn't thinking of myself when this happened .. Who does?
Now it's sinking in. I really have no life now. Everything is centered around Ricky (for good reason) and I've slowly disappeared into the background.
I can be both. An introvert and an extrovert. But I like to choose. Not be told what to do. And at the moment I am being forced because I have no other choice.
You can't have friends because you can't keep up your end of the relationship. You can't go anywhere therefore no socializing at all.
I like privacy but didn't want to be a hermit....how I feel right now.
Plus the inevitable happened and I strained my back. Has to be from leaning over ... Normally how I hurt it... That's all we need.
We have no choice except for to roll with it. And that's what we do.
Oh! I desperately need someone to sit with Ricky for like an hour or two a week so I can get everything done in the "outside world"..... I don't need much time away and I wouldn't ever leave anyone with medical things to do on him. All you would have to do is talk to him if he's Chatty Cathy or he sleeps a lot so you can even take a nap.
Anyway let me know if anyone can help me out text me, email me or FB message me. Thanks in advance.
My list keeps getting longer 😱......
As always thanks everyone for the support and the donations. Both are much needed right now, & there aren't enough words to express our appreciation! 😍❤️❤️❤️❤️ xoxoxo
https://www.gofundme.com/2a4dvu4
To help follow the link above. And please feel free to share the link. I desperately need the help right now. 😘😘
Thank all of youuuuuuuuu!! 💜💜💜 xoxo
About Joseph White and the cause he's running for ❤️❤️
https://give.reeve.org/fundraise?fcid=666761
Click the above link to donate.
http://podiumms.com/pages/2016-team-podium-joe-white
About Joe ~ read about him at the above link.
Extremely proud step mom!! ❤️❤️❤️❤️😍😍😍😍
This is Ricky's son by the way 😊😊
Click the above link to donate.
http://podiumms.com/pages/2016-team-podium-joe-white
About Joe ~ read about him at the above link.
Extremely proud step mom!! ❤️❤️❤️❤️😍😍😍😍
This is Ricky's son by the way 😊😊
Thursday, June 23, 2016
Finally off of "bed rest" 😊😊😊
Great doctor visit today. Ricky saw the plastic surgeon once more in order to make sure his skin flap surgery had healed. We were both told we did excellent jobs! It's fully healed and they couldn't even tell where it was 👏👏
He's finally off of "bed rest" and I still do not have his chair. Great system ....smh....
Now he can get physical therapy and occupational therapy. Which he needs desperately!
He still amazes me daily with the "new" things I see him do. I refuse to lose hope. We just have a longgggg road ahead of us.
Now on to the primary care physician finally on Monday. Then the urologist, pulmanologist, and the doctor that performed his back and neck surgery.
You think someone that has to see that many doctors would still be in the hospital. Nope. Our system is backwards. It's a full time job scheduling appointments and transportation for him.
I think each aspect of this is made to be tough so people will just give up and that's just sad to me.
I don't quit. I'm not giving up. And I never will.
He deserves to have a chance at walking again, regardless of his age.
If there was no movement in his legs I would let that go but he moves!!
And he will just keep getting denied the therapy he needs because of Medicaid.
Each person I deal with I have to remind them that I didn't choose to be a part of this system. This was a horrible accident, don't treat me or Ricky like dirt.
Anyway as always we are more then doing our part with this and the system keeps failing us.
Now if I knew a senator or a congressman with some pull he would be in shepherds center right now.... But I don't so he isn't and that's really messed up.
Thanks everyone for all of the donations this has all been overwhelming in a number of different ways. I wouldn't have made it this far without all of you!! 💜 xoxoxo
https://www.gofundme.com/2a4dvu4
He's finally off of "bed rest" and I still do not have his chair. Great system ....smh....
Now he can get physical therapy and occupational therapy. Which he needs desperately!
He still amazes me daily with the "new" things I see him do. I refuse to lose hope. We just have a longgggg road ahead of us.
Now on to the primary care physician finally on Monday. Then the urologist, pulmanologist, and the doctor that performed his back and neck surgery.
You think someone that has to see that many doctors would still be in the hospital. Nope. Our system is backwards. It's a full time job scheduling appointments and transportation for him.
I think each aspect of this is made to be tough so people will just give up and that's just sad to me.
I don't quit. I'm not giving up. And I never will.
He deserves to have a chance at walking again, regardless of his age.
If there was no movement in his legs I would let that go but he moves!!
And he will just keep getting denied the therapy he needs because of Medicaid.
Each person I deal with I have to remind them that I didn't choose to be a part of this system. This was a horrible accident, don't treat me or Ricky like dirt.
Anyway as always we are more then doing our part with this and the system keeps failing us.
Now if I knew a senator or a congressman with some pull he would be in shepherds center right now.... But I don't so he isn't and that's really messed up.
Thanks everyone for all of the donations this has all been overwhelming in a number of different ways. I wouldn't have made it this far without all of you!! 💜 xoxoxo
https://www.gofundme.com/2a4dvu4
Friday, June 17, 2016
Thank You EVERYONE!!! 💜 xoxo
I can't believe another week has flown by 😱 we will be home six weeks tomorrow. Doesn't seem that long. Doesn't seem like I have accomplished much but I have to stay positive. I'm sure I got more done then I know.
Ricky had a four day and four night run this past week. Wore me out and finally wore himself out. I have no idea how you stay awake for that long but he did. Was not fun.
Ricky continues to impress me daily with his "moves" ~ he's so determined! He just wants to get up and walk.
One more trip to see the plastic surgeon at the wound care center next week and I hope he will be cleared and will be off of bed rest. That way therapy will start again, and his chair better be here by then also.
As you can imagine I go through every single emotion we have on a daily basis but I can't imagine what Ricky is going through so that keeps me going.
Special thanks to Matt Breda for helping me maintain my "country living" ;) and to Mindy and Bob Hardison, you support is greatly appreciated! Debbie with premier you were way to generous. 💜 love my premier family and thank you for thinking of us! 🙏 blessed to have people like you in my life! Thanks for doing my dishes for me Michelle! I was ready to throw them a away 😂😂
Thanks to Meredith Breda for putting me in touch with Brooke. & Thanks to Brooke with SS you made my issues disappear in a snap! Forever in your debt! So much help!
Thank you for my Texas family! You guys have been amazing!!! I love you guys most!! xoxo
Thanks to Brandi for your continued guidance and help navigating this mess of a system with me. I wouldn't have made it this far without you and Stephen! You help keep me sane!!
Thanks to Kim for sitting with me at the hospital last week while Ricky had tests performed. I know it wasn't out of your way but it was time out of your life and time is precious. I so appreciate yours. And all that you have done for us, not enough words.....
Thanks Jenn and Stephen for doing a fundraiser for Ricky for your birthdays instead of gifts! What a selfless act! Love you guys!! ❤️❤️
Thanks to my mother and my aunts who continue to support me in EVERY way they can!
And As always thanks to the rest of my family for sticking by me as this hasn't been easy in any sense.
Thanks to everyone who has donated supplies or funds to go toward supplies! I have found out this stuff goes quick! I'm forever grateful!
Thanks to everyone who continues to think of us and pray for us. Both are much needed.
Becoming a hermit was not part of my life plan.... I know it has to get better from here!
All I know to do is to keep going, all I've ever done is change as my situation did throughout life. I have to continue to do that. Idk what else to do.
Any advice is welcomed. Such a lonely job. Especially when all of this is unfamiliar to me.
There's no way we would have made it this far without the support of our family and friends! We love you guys!! xoxoxoxo
Ricky had a four day and four night run this past week. Wore me out and finally wore himself out. I have no idea how you stay awake for that long but he did. Was not fun.
Ricky continues to impress me daily with his "moves" ~ he's so determined! He just wants to get up and walk.
One more trip to see the plastic surgeon at the wound care center next week and I hope he will be cleared and will be off of bed rest. That way therapy will start again, and his chair better be here by then also.
As you can imagine I go through every single emotion we have on a daily basis but I can't imagine what Ricky is going through so that keeps me going.
Special thanks to Matt Breda for helping me maintain my "country living" ;) and to Mindy and Bob Hardison, you support is greatly appreciated! Debbie with premier you were way to generous. 💜 love my premier family and thank you for thinking of us! 🙏 blessed to have people like you in my life! Thanks for doing my dishes for me Michelle! I was ready to throw them a away 😂😂
Thanks to Meredith Breda for putting me in touch with Brooke. & Thanks to Brooke with SS you made my issues disappear in a snap! Forever in your debt! So much help!
Thank you for my Texas family! You guys have been amazing!!! I love you guys most!! xoxo
Thanks to Brandi for your continued guidance and help navigating this mess of a system with me. I wouldn't have made it this far without you and Stephen! You help keep me sane!!
Thanks to Kim for sitting with me at the hospital last week while Ricky had tests performed. I know it wasn't out of your way but it was time out of your life and time is precious. I so appreciate yours. And all that you have done for us, not enough words.....
Thanks Jenn and Stephen for doing a fundraiser for Ricky for your birthdays instead of gifts! What a selfless act! Love you guys!! ❤️❤️
Thanks to my mother and my aunts who continue to support me in EVERY way they can!
And As always thanks to the rest of my family for sticking by me as this hasn't been easy in any sense.
Thanks to everyone who has donated supplies or funds to go toward supplies! I have found out this stuff goes quick! I'm forever grateful!
Thanks to everyone who continues to think of us and pray for us. Both are much needed.
Becoming a hermit was not part of my life plan.... I know it has to get better from here!
All I know to do is to keep going, all I've ever done is change as my situation did throughout life. I have to continue to do that. Idk what else to do.
Any advice is welcomed. Such a lonely job. Especially when all of this is unfamiliar to me.
There's no way we would have made it this far without the support of our family and friends! We love you guys!! xoxoxoxo
Thursday, June 9, 2016
Busy busy busy....
Another trip to Athens Regional yesterday. His discharge doctor from NE GA medical center, refused to write his refills on his meds (two addictive ones that you have to be weaned off of) told me to call Ricky's primary care physician.
He has yet to see his primary doctor because that's the first appointment we missed because of transportation issues. When I called to reschedule they were sooo nice to me (not!) that they rescheduled him for the 20th of this month....smh....
I also suspected a UTI. And I was concerned about that drainage tube coming out. I tried so hard to get the doctor on call to remove the rest of Ricky's staples from his healing bedsore but he wanted the plastic surgeon to do it. Since Ricky was not septic and antibiotics could be prescribed he wasn't admitted. We got there at 6:30pm and arrived home 4:30am. My sister in law Kim was awesome enough to come and sit with me while Ricky had his tests done. (Thank you P! Not enough words to thank you for all you do!❤️)
They thought they were done and I said what about the urine? Oh you wanted that tested too. Ummmm yes please. 🙏 thank goodness I did because he's on antibiotics now. And back home with me.
FF to 12:30pm and we were on our way to the plastic surgeon in Gainesville to get the staples removed.
Ricky got an awesome report, everything was removed. We go back in two weeks hopefully for the last visit 🙏
While there I ran into a good friend of mine I used to work with that now works for the transportation company I use. It was so good to see you Brandon!!! I feel like I've had no contact with the outside world for so long it was so nice to see a good friend!! 💜
So I Succeeded in getting Ricky's meds refilled but did not succeed with getting him admitted which I had hoped would start the referral process over again.....no such luck.
So before I lawyer up I will be calling all of my state reps from top to bottom to see if they can help us.
If not then I will be forced to get a lawyer in order to continue to fight for Ricky's health and quality of life. I will have exhausted ALL of my resources.
Ricky's asleep with all of his meds in him, continuing to heal and gain strength daily. He still amazes me!! Someone has to give him a chance!!! He has way too much potential.
I hope that we have a restful night and he will be ready for speech therapy in the morning.
Thanks for the continued support and prayers from EVERYONE we appreciate all of you ❤️❤️ XOXO
He has yet to see his primary doctor because that's the first appointment we missed because of transportation issues. When I called to reschedule they were sooo nice to me (not!) that they rescheduled him for the 20th of this month....smh....
I also suspected a UTI. And I was concerned about that drainage tube coming out. I tried so hard to get the doctor on call to remove the rest of Ricky's staples from his healing bedsore but he wanted the plastic surgeon to do it. Since Ricky was not septic and antibiotics could be prescribed he wasn't admitted. We got there at 6:30pm and arrived home 4:30am. My sister in law Kim was awesome enough to come and sit with me while Ricky had his tests done. (Thank you P! Not enough words to thank you for all you do!❤️)
They thought they were done and I said what about the urine? Oh you wanted that tested too. Ummmm yes please. 🙏 thank goodness I did because he's on antibiotics now. And back home with me.
FF to 12:30pm and we were on our way to the plastic surgeon in Gainesville to get the staples removed.
Ricky got an awesome report, everything was removed. We go back in two weeks hopefully for the last visit 🙏
While there I ran into a good friend of mine I used to work with that now works for the transportation company I use. It was so good to see you Brandon!!! I feel like I've had no contact with the outside world for so long it was so nice to see a good friend!! 💜
So I Succeeded in getting Ricky's meds refilled but did not succeed with getting him admitted which I had hoped would start the referral process over again.....no such luck.
So before I lawyer up I will be calling all of my state reps from top to bottom to see if they can help us.
If not then I will be forced to get a lawyer in order to continue to fight for Ricky's health and quality of life. I will have exhausted ALL of my resources.
Ricky's asleep with all of his meds in him, continuing to heal and gain strength daily. He still amazes me!! Someone has to give him a chance!!! He has way too much potential.
I hope that we have a restful night and he will be ready for speech therapy in the morning.
Thanks for the continued support and prayers from EVERYONE we appreciate all of you ❤️❤️ XOXO
Monday, June 6, 2016
Picture of Ricky
A face to put with the name :) One of my favorite photos. Ricky and his granddaughter Reagan walking on the beach. XOXOXO
Sunday, June 5, 2016
Snickers!
Finally back on track. I have found that any little shift in schedule (even though our schedule is weird) really affects him in a negative way 😞
The craving of the day is a snickers bar! For the past three days it has been a cheeseburger!
We are still diligently practicing swallowing water. He struggles some still but it's going down the right way. So that's a plus! Tastes awful to him he says. I'm sure his palate has changed!
His drain from his repaired bed sore came loose yesterday. First the balloon opened in Ricky's sleep and drain all over the bed .. Mess to clean up. Then he kept telling me his butt hurt. Felt like it was on fire he said, so I looked and the stitch holding the drain tube in was stretched out and pulling on his skin. So I clipped the suture. Well my bad because now the pump balloon is deflated and it's no longer draining.
Im not going to worry too much as everything comes out next week and should have come out this week. Just another mishap.
I got a seaweed/silver type medicine for Ricky's ankle. No more zinc as it's just a barrier.....
I feel much better about this working.
Oh and I've figured out this home health care is just a bunch of bull also. Just checking off their boxes until they can "discharge" him. Smh.....
I need so much help with this system ....that I do not know. 😨
Any advice is welcome as I am stumped with all of this.
Once again THANK YOU so much for the donations that keep coming. We wouldn't have made it this far without you guys and we love you! Muah! XO
The craving of the day is a snickers bar! For the past three days it has been a cheeseburger!
We are still diligently practicing swallowing water. He struggles some still but it's going down the right way. So that's a plus! Tastes awful to him he says. I'm sure his palate has changed!
His drain from his repaired bed sore came loose yesterday. First the balloon opened in Ricky's sleep and drain all over the bed .. Mess to clean up. Then he kept telling me his butt hurt. Felt like it was on fire he said, so I looked and the stitch holding the drain tube in was stretched out and pulling on his skin. So I clipped the suture. Well my bad because now the pump balloon is deflated and it's no longer draining.
Im not going to worry too much as everything comes out next week and should have come out this week. Just another mishap.
I got a seaweed/silver type medicine for Ricky's ankle. No more zinc as it's just a barrier.....
I feel much better about this working.
Oh and I've figured out this home health care is just a bunch of bull also. Just checking off their boxes until they can "discharge" him. Smh.....
I need so much help with this system ....that I do not know. 😨
Any advice is welcome as I am stumped with all of this.
Once again THANK YOU so much for the donations that keep coming. We wouldn't have made it this far without you guys and we love you! Muah! XO
Thursday, June 2, 2016
Inspiration!!!
Speech therapist just left. They come out twice a week to work with him in his cognitive function (?? It's all there)
All of the tools they bring are too easy for him. Not even a challenge. I practice on my own with him and make it a challenge. It's not hard to do, kind of common sense. She asked why he was doing so well. Because we practice. What do you think we do 24 hours a day here? Just sit here and do nothing? Psssstttt we would both be in the asylum for insane people if we did that. Nooooooo I have all kind of things we do throughout the day that's different kinds of therapy. I just incorporate it into our daily activities. I thought that's what you were supposed to do?
And I can already tell you it won't be four months before he can eat.
He was so pissed at me last night for not giving him a cheeseburger!! I was like woah, baby steps. I won't repeat the words that he said back to me but all of you that know us can insert them yourselves 😂
I pacified him with water as that's all he can have for now. He's getting good at it too. Drinks three small Dixie cups a day of water. No coughing 👍 and I can tell it's getting easier on him. Now he's not ready for a cheeseburger but I would think that he could be put on soft foods soon. No appointment scheduled yet for another swallowing test but I'll be asking for one next week. Need to step this up. He's motivated more than you can imagine!
He wants to get out of bed and simply walk to the door..... He wants to eat, go outside, ride in a car, play his drums, get eggs from his chickens and then some!!
He amazes me in some new way everyday!!!
If he's not an inspiration for you, he should be!! He's my inspiration!
XOXO
(And the donations keep coming! Thanks is not enough in this case. The amount of supplies I go through is incredible and every little bit helps! We so appreciate everyone!!!!)
All of the tools they bring are too easy for him. Not even a challenge. I practice on my own with him and make it a challenge. It's not hard to do, kind of common sense. She asked why he was doing so well. Because we practice. What do you think we do 24 hours a day here? Just sit here and do nothing? Psssstttt we would both be in the asylum for insane people if we did that. Nooooooo I have all kind of things we do throughout the day that's different kinds of therapy. I just incorporate it into our daily activities. I thought that's what you were supposed to do?
And I can already tell you it won't be four months before he can eat.
He was so pissed at me last night for not giving him a cheeseburger!! I was like woah, baby steps. I won't repeat the words that he said back to me but all of you that know us can insert them yourselves 😂
I pacified him with water as that's all he can have for now. He's getting good at it too. Drinks three small Dixie cups a day of water. No coughing 👍 and I can tell it's getting easier on him. Now he's not ready for a cheeseburger but I would think that he could be put on soft foods soon. No appointment scheduled yet for another swallowing test but I'll be asking for one next week. Need to step this up. He's motivated more than you can imagine!
He wants to get out of bed and simply walk to the door..... He wants to eat, go outside, ride in a car, play his drums, get eggs from his chickens and then some!!
He amazes me in some new way everyday!!!
If he's not an inspiration for you, he should be!! He's my inspiration!
XOXO
(And the donations keep coming! Thanks is not enough in this case. The amount of supplies I go through is incredible and every little bit helps! We so appreciate everyone!!!!)
Tuesday, May 31, 2016
The sleepless week
Wow! What a week! Time flies by for me as I am constantly doing something. And I am constantly behind....I don't know how it works out like that but it does ;)
Ricky spent most of this entire week fighting sleep. I thought he was going to set the record for hours awake at one point.
He always has a full week between nurses and therapists coming out to check on him, in addition he had a lot of visitors this week. Normally would wear someone out but he just kept going.
If he doesn't sleep he starts seeing things so that's a fun side effect of the no sleep process too!
We've built many houses and have re done numerous rooms and buildings, throughout the early morning hours.
That's still one topic I cannot get him off of ... Work.
He worked for so long and loved what he did, he's constantly making material lists in his head and taking measurements I have to remember 😉
I've tried everything to help self soothe him and nothing works. I started giving him melatonin per my sisters advice, last night.
Tonight he finally went to sleep after he got his night time meds which is what he's supposed to do.
I also added the DVD player and just put a familiar movie on for him and left it. He didn't want to watch anything as usual but I did it anyway. I think that helped....
Anyway thank you to everyone who has donated supplies to us! Very Much needed!
We wouldn't have made it this far without the help of our family and friends so thank you soooo much we greatly appreciate you! xoxo
Jill
(Many Many thanks to Joseph who came down today and sat with his Dad for two hours so I could take a nap!! Much needed and helped me so much! Love you guys Joseph! ;)
Ricky spent most of this entire week fighting sleep. I thought he was going to set the record for hours awake at one point.
He always has a full week between nurses and therapists coming out to check on him, in addition he had a lot of visitors this week. Normally would wear someone out but he just kept going.
If he doesn't sleep he starts seeing things so that's a fun side effect of the no sleep process too!
We've built many houses and have re done numerous rooms and buildings, throughout the early morning hours.
That's still one topic I cannot get him off of ... Work.
He worked for so long and loved what he did, he's constantly making material lists in his head and taking measurements I have to remember 😉
I've tried everything to help self soothe him and nothing works. I started giving him melatonin per my sisters advice, last night.
Tonight he finally went to sleep after he got his night time meds which is what he's supposed to do.
I also added the DVD player and just put a familiar movie on for him and left it. He didn't want to watch anything as usual but I did it anyway. I think that helped....
Anyway thank you to everyone who has donated supplies to us! Very Much needed!
We wouldn't have made it this far without the help of our family and friends so thank you soooo much we greatly appreciate you! xoxo
Jill
(Many Many thanks to Joseph who came down today and sat with his Dad for two hours so I could take a nap!! Much needed and helped me so much! Love you guys Joseph! ;)
Monday, May 23, 2016
Sunday and Monday
Sunday was a restful day.....no visitors except for a quick 5 minute visit from a neighbor.
Ricky still seemed to be exhausted.
I was actually able to clean up a little bit around the house and do some laundry while he rested! Believe me that's a big deal because it's rare. Amazing the small things you miss.
He had an okay day which turned into a sleepless night.
He talked to me from 3-6am I got up at 7 to turn him and give him medicine and he was just talking jibberish. I don't like one of the medications he's on for anxiety because it makes him loopy. When we see the primary care doctor I will get that medicine changed.
Going into Monday he was still pretty out of it since he fought sleep all night.
He had a few visitors, his brother and sister in law stopped by but he slept the entire time.
I re scheduled his speech therapy for tomorrow hoping for a better night tonight. I knew there was no way he would even respond to the therapist so I rescheduled.
He has constant muscle spasms that are painful for him so if he doesn't get rest, he's overly tired because of the pain.
He slept a lot today I'm hoping he doesn't have his nights and days mixed up. As he's still awake at 11pm which is unusual.
I take it day by day. Not a whole lot of progress was made today but we will make it up.
Thanks everyone for your continued thoughts and prayers! xoxoxoxo
Ricky still seemed to be exhausted.
I was actually able to clean up a little bit around the house and do some laundry while he rested! Believe me that's a big deal because it's rare. Amazing the small things you miss.
He had an okay day which turned into a sleepless night.
He talked to me from 3-6am I got up at 7 to turn him and give him medicine and he was just talking jibberish. I don't like one of the medications he's on for anxiety because it makes him loopy. When we see the primary care doctor I will get that medicine changed.
Going into Monday he was still pretty out of it since he fought sleep all night.
He had a few visitors, his brother and sister in law stopped by but he slept the entire time.
I re scheduled his speech therapy for tomorrow hoping for a better night tonight. I knew there was no way he would even respond to the therapist so I rescheduled.
He has constant muscle spasms that are painful for him so if he doesn't get rest, he's overly tired because of the pain.
He slept a lot today I'm hoping he doesn't have his nights and days mixed up. As he's still awake at 11pm which is unusual.
I take it day by day. Not a whole lot of progress was made today but we will make it up.
Thanks everyone for your continued thoughts and prayers! xoxoxoxo
Sunday, May 22, 2016
Ricky's needs - update #1,
(This is very hard for me to do......ask for help. I've always done everything myself, on my own. And I can't with this. I realize that.)
I also know people want to help and this way you'll know the things we will always need!
•Briefs, not underwear with elastic but briefs like diapers.
• Pads to go underneath him, constantly need those.
• Baby wipes I have found out I can't have enough of them.
• Diaper rash cream
• Bottled water as I go through a lot because that's what I put in him the most. Remember he still has his feeding tube.
Medicaid won't pay for the food...
• It's called 2 cal and he's also on • Juven. Both are over the counter but not many people carry it.
Since Medicaid won't cover the food it will cost me around $400 a month to feed him.
So I need all of the 2 cal
And Juven I can get!! Juven is made by ensure just kept behind the counter. 2 cal might have to be ordered.
This will go one for at least five more months ....I'll have to feed him through his stomach tube .
• Laundry detergent ... I just buy that arm and hammer sensitive skin for Ricky. I have to do at least two loads of laundry a day.
• Bandages
•Gauze
•Medical tape
•Sterile gloves
•And twin flat sheets.
I Might have to update this as I go along but these are the supplies I need for now.
Many many thanks!!! XOXOXO
Jill
First ... THANK YOU ALL! An over whelming amount of support and we love you for it! You guys have huge hearts ❤️❤️❤️🙏🙏😇😇😇😇😇
Additional needs:
• Rubbing alcohol
• Medical tape (any kind will work as long as it sticks! ;)
• Batadine (sp?)
• Any kind of cleaning supplies. I can't leave the house at all really so an essentials are greatly appreciated!! 😘😘
• As many sterile gloves that I can get. I can't count how many we go through in one day!
• He's not on Juven anymore, but it doesn't hurt so if you have already tracked some down ....
It will def be used,!
Many many many thanks!! ❤️❤️❤️ Xoxo
Lazy Saturday
Ricky was exhausted yesterday ( Saturday) from everyone coming over on Friday, he slept almost all day long! He did have a few visitors. My mom and Larry came and my brother and his family came to check on us. The short visits are always good for Ricky!!
Ricky got cleaned up from head to toe, for new sheets to be put on his bed!
He had two blisters on his heal bones. I caught one early enough in the hospital to where the scab just dropped off. However the other heal has now become a bed sore. He developed them early on during his hospital stay. Something new for me to worry about! I'll get it healed one way or another.
I don't like the ointment they gave me to use as there's zinc in it. Now looking for something new. Any feedback is much appreciated!!
I have an awesome support system and love everyone that continues to pray and help us through this! There's no way I could do all of this myself.
I pretty much have everything I need. However Ricky will have on going needs.
For those of you that want to help I will post a list of the things Ricky requires that I will have to come out of pocket for.
As you all know I'm extremely frustrated with this system. It makes zero sense to me. Once you see my list you guys will understand more!
Trying my best to keep this blog going so you guys don't have to
Text everyday .... You still can if you want to though 😘......
Being a full time caretaker is a lonely job 😏
Ricky got cleaned up from head to toe, for new sheets to be put on his bed!
He had two blisters on his heal bones. I caught one early enough in the hospital to where the scab just dropped off. However the other heal has now become a bed sore. He developed them early on during his hospital stay. Something new for me to worry about! I'll get it healed one way or another.
I don't like the ointment they gave me to use as there's zinc in it. Now looking for something new. Any feedback is much appreciated!!
I have an awesome support system and love everyone that continues to pray and help us through this! There's no way I could do all of this myself.
I pretty much have everything I need. However Ricky will have on going needs.
For those of you that want to help I will post a list of the things Ricky requires that I will have to come out of pocket for.
As you all know I'm extremely frustrated with this system. It makes zero sense to me. Once you see my list you guys will understand more!
Trying my best to keep this blog going so you guys don't have to
Text everyday .... You still can if you want to though 😘......
Being a full time caretaker is a lonely job 😏
Saturday, May 21, 2016
Busy Day at the "White" house!
We had an extremely busy day yesterday starting with a rep from Source, a company through Medicaid that will come out and sit with him, help me with bathing, they will help with house work, eventually, down the road, meals on wheels, and many other great services. We were fortunate as Ricky was on the waiting list and within a week a spot opened. Which I am told never happens.
It will take a month or two to kick in but we got the process started.🙏
Ricky's nurse came out next and assessed him, he's doing great! Wound still looks good 👍
She even sat with him while I ran to the pharmacy. Which also paid off because I found out they would deliver to me and order everything he needs. So that was a productive 15 minutes away from home!
Ricky's speech therapist came out as his nurse was leaving. He's also doing very well with speech and is already exceeding his therapists expectations!
He's getting better with his cognitive function and is swallowing water more now. Stepped up from the straw and is sipping now too.
This process will take a while because of his neck surgery and having a trach. Probably won't be able to eat solid food for 4-5 months. So he still has a feeding tube in & will for some time.
After the therapists came out he had a ton of people come out to visit him. Family and good friends. It was good for his spirit. But he is exhausted, as am I, I will admit, from it all.
He spent time talking with family and catching up. And he spent time with friends he hasn't seen in a while, while they listened to music.
Music is all that soothes him. He has had no interest in watching tv since this happened. So I was happy to see that. I was able to see some familiar facial expressions I haven't seen in a while when his good friends were here.
It was a busy, productive, good day yesterday!
Thanks again for the prayers and support as they are still much needed!! xoxo
It will take a month or two to kick in but we got the process started.🙏
Ricky's nurse came out next and assessed him, he's doing great! Wound still looks good 👍
She even sat with him while I ran to the pharmacy. Which also paid off because I found out they would deliver to me and order everything he needs. So that was a productive 15 minutes away from home!
Ricky's speech therapist came out as his nurse was leaving. He's also doing very well with speech and is already exceeding his therapists expectations!
He's getting better with his cognitive function and is swallowing water more now. Stepped up from the straw and is sipping now too.
This process will take a while because of his neck surgery and having a trach. Probably won't be able to eat solid food for 4-5 months. So he still has a feeding tube in & will for some time.
After the therapists came out he had a ton of people come out to visit him. Family and good friends. It was good for his spirit. But he is exhausted, as am I, I will admit, from it all.
He spent time talking with family and catching up. And he spent time with friends he hasn't seen in a while, while they listened to music.
Music is all that soothes him. He has had no interest in watching tv since this happened. So I was happy to see that. I was able to see some familiar facial expressions I haven't seen in a while when his good friends were here.
It was a busy, productive, good day yesterday!
Thanks again for the prayers and support as they are still much needed!! xoxo
Thursday, May 19, 2016
First Appt with Primary Care Physician
I knew all of this would be challenging but I had no idea just getting to and from a doctor would be an issue.
We were left at the doctors office for four hours on Tuesday before the office called another service to take us home.
I had already scheduled the service for today to take him to see his general physician.
Transportation called me at 10:20 and said they would be here in 1/2 an hour. His appointment was at 10:30..... Cancelled the service and had to reschedule the doctors visit. I have a new company to call and will definitely use them the next time we go to the doctor!
Ricky is still doing well at home. He still has some confusion but I know what meds are doing it to him and plan to get them changed.
We didn't have a great night last night anyway. I think Ricky was overstimulated in some sense. My last call with him is at 2:30am I get him settled then I can get a few hours of consistent sleep.
I laid down at 3am and Ricky woke me up at 4:30 am because it was dark, that was his reason....lol
Anyway got him ready for the doctors around 7:30 and then got myself ready. No show on the transportation.
I'm sure this is just part of the system that I am trying to figure out.
I in no way wanted to be a part of this system because I knew how messed up it was.
It's beyond messed up. No one can fix the mess they created with this medical industry.
It's their ride and I have to get in and hold on tight. Everything is backward from what you were taught.
It's been a struggle but without family and friends support we wouldn't have made it this far!
So in case I haven't thanked anyone lately, I greatly appreciate all that you do for Ricky and I and I do not know where we would be without you guys!!!
Home health care nurse and speech therapist come out to see him tomorrow.
And also a company called Source, that's through Medicaid, is coming out to assess him. They will come out and sit with him while I do errands and they offer many other services so I am happy a spot became available for him.
We will continue to refer him to outpatient therapy centers in the meantime.
Thanks again for all of the prayers and support!!
We were left at the doctors office for four hours on Tuesday before the office called another service to take us home.
I had already scheduled the service for today to take him to see his general physician.
Transportation called me at 10:20 and said they would be here in 1/2 an hour. His appointment was at 10:30..... Cancelled the service and had to reschedule the doctors visit. I have a new company to call and will definitely use them the next time we go to the doctor!
Ricky is still doing well at home. He still has some confusion but I know what meds are doing it to him and plan to get them changed.
We didn't have a great night last night anyway. I think Ricky was overstimulated in some sense. My last call with him is at 2:30am I get him settled then I can get a few hours of consistent sleep.
I laid down at 3am and Ricky woke me up at 4:30 am because it was dark, that was his reason....lol
Anyway got him ready for the doctors around 7:30 and then got myself ready. No show on the transportation.
I'm sure this is just part of the system that I am trying to figure out.
I in no way wanted to be a part of this system because I knew how messed up it was.
It's beyond messed up. No one can fix the mess they created with this medical industry.
It's their ride and I have to get in and hold on tight. Everything is backward from what you were taught.
It's been a struggle but without family and friends support we wouldn't have made it this far!
So in case I haven't thanked anyone lately, I greatly appreciate all that you do for Ricky and I and I do not know where we would be without you guys!!!
Home health care nurse and speech therapist come out to see him tomorrow.
And also a company called Source, that's through Medicaid, is coming out to assess him. They will come out and sit with him while I do errands and they offer many other services so I am happy a spot became available for him.
We will continue to refer him to outpatient therapy centers in the meantime.
Thanks again for all of the prayers and support!!
Ricky's first doctor appointment
Doctor appointment with his plastic surgeon on Tuesday. It went well. He removed half of the staples and we go back in two weeks for the rest of the staples to be removed and for the drainage tube to come out. He had the surgery the Wednesday before he was transferred, on his stage four bedsore. Dead tissue went down to the bone so what's called a flap surgery was performed by Dr Campbell in Gainesville.
Today we didn't have any visitors
Or and home health care people come out but I did hear from source because a space became available. Service through Medicaid where someone will come out and sit with him for me. They will come out on Friday.
We have a doctor appointment with his general
Physician tomorrow morning. So I will keep you posted !
Today we didn't have any visitors
Or and home health care people come out but I did hear from source because a space became available. Service through Medicaid where someone will come out and sit with him for me. They will come out on Friday.
We have a doctor appointment with his general
Physician tomorrow morning. So I will keep you posted !
Overview
I'm starting this blog for Ricky. As most of you know he's come a long way since the accident on 1/16/16.
After 100 days at Athens regional we were transferred to Gainesville for inpatient therapy. We were there for 12 days and he was really progressing. The day he was discharged I walked in and he had his right hand reaching up to scratch!!
Unfortunately I'm fighting a never ending battle with the government/ Medicaid right now.
I'm trying to get him outpatient therapy now. As Medicaid won't pay for another transfer for inpatient rehab like shepherds.
He came home on May the 7th and I have been his full time nurse since then.
I either had to learn how to do all of the medical needs that he requires or he would have been placed in a nursing home.
So for those of you that want to keep up with his progress, as this is going to be a long road, you can read this blog.
After 100 days at Athens regional we were transferred to Gainesville for inpatient therapy. We were there for 12 days and he was really progressing. The day he was discharged I walked in and he had his right hand reaching up to scratch!!
Unfortunately I'm fighting a never ending battle with the government/ Medicaid right now.
I'm trying to get him outpatient therapy now. As Medicaid won't pay for another transfer for inpatient rehab like shepherds.
He came home on May the 7th and I have been his full time nurse since then.
I either had to learn how to do all of the medical needs that he requires or he would have been placed in a nursing home.
So for those of you that want to keep up with his progress, as this is going to be a long road, you can read this blog.
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