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! ;)

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'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 😏

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

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!!

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 !

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.