Wednesday, November 26, 2014

The Holiday Season has begun!

Hello everybody!  Glad to report that Dean has settled in and we had a very boring weekend together at HOME!  I was getting ready for Thanksgiving, and Jake was playing with all his toys and messing up the place after I cleaned it! :)

The weather on Saturday was crazy warm and beautiful!  Jake and I went outside to Play!

Jake flying his kite!  He's awesome!

And, of course a little scooter time!

I also got a chance to put up some Christmas Decorations!  I have a long term agreement with Dean that I will wait until after Thanksgiving to put our tree up, BUT, he agreed that I can put up my nutcrackers and my nativity scene.

I have 55 nutcrackers and counting.  Do I need more?  YES, do I want more?  YES!!!



All set up!

And, Jake put "Jacob the fisherman" and "Michael the angel" next to baby Jesus.
I do believe that is where they should go!

I also was able to get some of our yard decorations ready.  
We are going to have a GREAT Christmas Yard!!!

We have 4 of these reindeer.  We thought they were small, the box was small, but everything was tucked inside the body!  They are taller than Jake!

And, just a quick update on Dean.  He's doing great!  He's enjoying his time home and getting back to the normal swing of things.  He still has some recovery to do, but so far things have gone very well.  He will be up and rolling soon!  Please pray for continued healing and strength!

On that note...

May you all be thankful for everything you have this Thanksgiving.

Please pray for our service men and women serving away from their family's.  
Thank you for all you do for us.

Please think of everybody who has to spend the holidays in a hospital bed.  And pray that they have nurses and staff who care and take care of them properly and that they have visitors.

I am so thankful for friends and family for all the support I've had these last few months.

I am grateful Jake, my wonderful son, who really took care of me as well.
And to his courageous birth parents who I think of every day as I look into their faces every time I look at Jake. 

I am thankful that my awesome husband Dean was able to come home before the holidays and spend some much needed time with his family.  

Happy Thanksgiving!

Friday, November 21, 2014

Dean Is HOME!

So, after almost 4 months, 4 surgeries, 3 hospitals, terrible neglect, and even more terrible food, Dean came home around 3:00 pm on Thursday, November 20, 2014.

When he got home, it was surreal. I had been working on painting our bedroom and he had not seen it in person, only in pictures. I think a lot of emotions were going around because we both breathed a sigh of relief, and some happy tears.

Jake was at school the whole day.  I told him his Daddy was coming home and I think he thought he would get to wait for him at home.  He did NOT want to go to school on Thursday.  He started crying while at home and all the way there, and I had to leave him at school while he was still crying.  I HATE doing that, but this is the new normal and we must go with it.  When I picked him up at the end of the day he was perfectly fine, told me about how much fun he had during the day.  He was really excited to get home to see his Daddy.

And, when we got home, the boy never left his Daddy's side!  Even when we had dinner, he wanted to sit right next to him.  It was really great!  We all watched some Umi Zoomi, which he really loves watching with his daddy (Belly Belly Belly screen!).

I made us a delicious smoked turkey pot pie!  SO GOOD!  The smoked turkey really makes a great pot pie and makes the house smell like yummy smoked goodness!  It was nice to sit together and have a home cooked meal AT HOME.
Turkey Pot, Turkey Pot, Turkey Pot PIE!!!

Dean still has some healing to do, and we are all doing it together.  The experience at Kindred was completely horrible and will take some time for all of us to get over.  Now that he is home, some of our stories are quite unbelievable.  As we recall all he went through, it's almost more of a concept we cannot quite grasp.  I will tell you though, who I really feel for is all the people at Kindred that cannot speak up for themselves.  They are being mistreated and neglected and they are not able to say anything.  So, please say a quick prayer or send thoughts their way.

I wish you a very Happy Thanksgiving, and I hope you have much to be thankful for.
We are very thankful Dean is home for the Holidays!

Wednesday, November 19, 2014

The Longest Post

This is a long post.  Lots of information, lots going on.  But, worth the read.  It gets good!

Dean's Birthday 11/14
So, Friday was Dean's birthday.  He was doing alright by the time I got to see him, which was of course later in the evening.  We got to the hospital around 5:30.  Jake actually got a nap today, so he was doing quite well at the hospital today.

We got to enjoy some home made chicken fajitas with all the trimmings, and enjoyed some yummy Pineapple Upside Down Cake that I made with Jake's help.  Just as we finish, Dean's parents come in.  this is where it gets strange.

His parents are walking in slowly, just so they don't rush into any thing, and I look up and say hi then I see something strange.  Another patient was walking in the room!  He looked confused and really really ANGRY.  Furious in fact.  He was really confused and I'm sure he didn't know where he was.  He pushed past Linda and Durwood and my mother tried to stop him but as he was getting past her I got to him and guided him out of the room. I had to use some force, but I got him out of the room. There was NOBODY in the hallway, not a nurse, tech, or anybody.  so, I was trying to push him into the more open hallway so I can ask for help.  Then it got even MORE weird.  He grew angry with me and pushed me away and swung a restraint belt at me, hitting me on my leg.  It stung a little but it was more of a graze than a full on hit.  He then turned on a nurse who was walking down the hall.  He swung multiple times then he lost his balance and fell HARD on his hip and shoulder, but didn't his his head.  That's when another nurse (a guy) finally came around the corner and that's when we closed the door so he wouldn't get in again and we were no longer involved.

Let's just say this is a terrible thing to happen.  We have been worried about the quality of Dean's care for some time, but now since this patient walked in his room, who's going to stop him from doing it again?  He could have injured any of us in the room, me, my mom, Dean's parents, my son, and Dean.  I reported the incident to one of the nursing supervisors on the floor, and I know they had someone watching him when we left, but still, it's very frightening.

MRI Results
They still showed a very small infection spot.  However, Dr D does not recommend surgery at this time, and Dr A and Dr Z (Internal disease doctor) are in agreement. So where does that leave us.  Well, Dr Z is going to have some radiologist study his latest MRI and his previous MRI to decide if the spot is smaller, the same size, or bigger than it was before.  If it's smaller or the same size, and we are talking pretty small, he will most likely be sent home and have a regime of IV antibiotics every 8 to 12 hours to be done by a home health care provider.  If it's bigger, he could be recommended to start an intense antibiotic treatment for 4 weeks at the hospital.  They would have to monitor him since the antibiotics can harm the kidneys if they are not watched.  We will most likely have an option to do the 4 more weeks or come home and do the lesser antibiotics.

Daycare Changes
Of course this is not all that happened this week.  I decided Wednesday that I had had it with Jake's Daycare, Kids R Kids of Fall Creek.  I tried to drop him off and again his teacher was not there.  See, his room didn't have assigned teachers that get there before 8 am.  Seems like a good idea since most people who use a daycare can drop their kids off after 8 am, right?  WRONG!  This has been going on for about 6 weeks or more.  So, I went to the cafe to get him milk and I didn't see a teacher who was staying with him, so I went to another class, that teacher told me to go to the Cafe.  When I get to the cafe, I see 1 teacher leading kids away and she says no, you need to go to the other class room.  So, I basically LOST it, took Jake home to stay with my mother.  I did yell at the desk lady that they need to get this teacher issue FIXED NOW and stormed out of the building.  She actually followed me out and was asking what's wrong, like she didn't know, and I told her to get away from me.

Later that morning I called the owner, told him I was dis-enrolling my son, and demanded my next year's enrollment fee back that I just paid and the current weeks tuition.  He didn't even flinch and promised me the refund after I told him what happened that morning and what was going on in the last few weeks.

We got to visit 2 other day cares in the area, Children's Learning Adventure and Primrose.  Both were nice, both were more expensive than KRK but at least I feel that the teacher will be there and on time!  We ended up picking Children's Learning Adventure.  He starts his new school Monday.  I do hope he will be okay.  I've been talking about going to the new daycare for a few days now, and will continue until we go on Monday.  He keeps telling me he will cry a little but be okay after that.

One thing I will really miss is that KRK had online real time video camera streaming.  It was great to be able to log in and take a look at him anytime.  Of course lately it was always in front of a video screen or smart board while the teacher walks them through ABC Mouse instead of having them use the computers they have available for the students to use.  We were already going to start looking for a new day care after the new year, but we really wanted to hold out until then. But, that was the last straw and I'm kind of glad I never have to set foot in that place again!  EVER!

Last week at Kindred
So, after all that above (which I wrote at midnight on 11/15) the next day things got even more frustrating.  While I was visiting Dean in the morning (Queenie and Jake stayed home for the morning) the CEO of Kindred came in to see how we were doing.  We both assumed he was coming in to address the incident that happened the day before.  But, guess what.  YOU guessed it!  He had not heard a THING!  He heard (from the night nurse supervisor) that "a patient fell" and the day nurse supervisor heard the same thing. When we told him the story, all he said was that he was sorry and that he would make sure they would keep a sitter in his room 24/7.

Dean has been telling this story to everybody that came in for the next 2 or 3 days.  Dr. Z even said if he was hearing this from anybody else he wouldn't believe it!  It was so unreal!  This hospital needs some serious wake up calls!  HELLO!  Take care of your patients!  Give them Edible food!  Treat them with respect!

The rest of the weekend was pretty uneventful.  Mother, Jake and I got to go to the Nutcracker Market.  We successfully road the train to NRG park and back without any kind of assault or anything!  YEY!  We didn't get to see it all, we went after the 1/2 price cut off and there was  A LOT to take in, but we had a great time.

Sutures came out Monday. Dr A did it himself.  Glad we didn't leave it up to the hospital staff, and really glad we didn't have to wait until Friday 11/21

Daycare Update
Monday, was new school day for Jake.  We had been trying to get him ready for the new school in any way we could.  I knew it was going to be hard, but I was hoping it wouldn't be too bad. When we got up and talked about it, he kept saying he would cry and I said that was ok, but it will all be fine.  When we got there he was fine, I filled out some paperwork and he was fine, and I signed in he was fine, got to the classroom he was fine, then, he realized, oh, I'm staying and you are leaving and there it was, crying.  I talked to him a little, his teacher picked him up, they walked me to the door and I said bye, and left and managed to not cry until I got to the truck!

It was REALLY REALLY hard to not just go to the video and watch online!  Wow, that's a huge perk I really wish they had.  But, since I needed to get his flu shot that afternoon (i know, bad timing, but it's all I could do) he was getting ready to go to the playground!  And, the teacher said he did great!  He even got to go bowling since it was so cold that morning and they didn't go outside!  YEY!  He did really great getting his shot too, he did cry, and wondered why the nurse left a hole in him, but he limped to the car (such a drama king!) and we got a "flushie" at sonic.  A Pineapple one, its what he wanted, I'm good with that.

Tuesday was better.  He got a little weepy, but the teacher was playing with a puzzle and told him it was too hard for her to do alone.  (GOOD TEACHER!) He walked me to the door, said our I LOVE YOUs and he closed the door and walked to the teacher and puzzle.  He really is a good kid!

More MRI Results
They came back the same, like I said before.  He has a very small spot on his tail bone that's still showing signs of infection.  It's small, so small the surgeon doesn't want to operate.

Dr Z said he had 2 options:
  1. Get on some really powerful antibiotics, these may hurt his kidneys, he would require blood tests daily, stay in hospital 4 more weeks, get an MRI to compare at that time.  If gone, stop and go home.  If still there, do 4 more weeks, get MRI, continue until done.
  2. Stop antibiotics, get home before Thanksgiving, come back in a month to get another MRI.  If the MRI shows no to very little growth, he will schedule another MRI early next year.  At that point if the spot is same or very little growth, schedule MRI again in 3 months.  If it's wide spread, do the 4 week regimen above.
We have decided on option 2.  HE WILL BE HOME BEFORE THANKSGIVING!

This week has been full of logistics, removing the sutures and getting any and all appointments and home health care necessary in order.  We are working on getting a new bed, new patient lift, and a new cushion.

Tuesday we hear the best news ever.

Now, to finish getting the house ready for the big day.  AND, a week before Thanksgiving!  He won't be able to be in his chair for 2 more weeks, but at least I get to take care of him and he can eat real food!

A reason to be thankful for Thanksgiving.  Thank you all for your thoughts and prayers.  It's been a long road, and we still have obstacles, but together we will get through anything!

Lookie what I got Dean for His Birthday
Leroy Neiman painting print of John Elway

Pineapple upside down cake for Dean's Birthday

Gourmet donuts from Glazed 

Jake riding a zebra at the Nutcracker Market

Tuesday, November 11, 2014

Good News yet some Uncertainty

Well, I wish I could say something concrete about what's going to happen in the next 2 weeks for Dean.  But I can't.  The reason is not one single doctor/nurse/staff person can know for sure what's going to happen or when things will happen.  So much is dependent on so many things, it's like nailing Jell-O to the wall.

So, for the GREAT news!  Dean's surgeon Dr. D. said the surgical spot is LOOKING GREAT and he was going to ask that someone at Kindred remove the sutures, but then realized who he was asking to do this, so he schedule a follow up on 11/21 to remove the sutures.

However, Dean is going to ask his wound care doctor Dr. M next time he sees him (hopefully this week) if they are ready to come out can he do it then.  Dean's pretty sure that Dr. D scheduled it 2 weeks out because of scheduling not because his wound is not healing.  Dr. A (aka Bow tie) even said the wound looks good, so that's not hopefully going to hold us up from coming home.

What IS going to hold us up from him coming home is his blood work.

His latest blood test has shown that his numbers have not gone down for the 2nd week in a row.  Again, these numbers are the lowest they have been since his initial surgery, and have stayed the same after 1 week.  We also just learned he will be scheduled for an MRI this week, and has a promise to get the results back to him within a few hours.  He is not confident it will be the same day, but hopefully it will be.

So, now, the scenarios are this:

  1. The MRI shows nothing.  Antibiotics will stop, and we will then be waiting on wound healing and suture removal.  Like I said above he's going to inquire with Dr. M to see if it can be done sooner than 11/21.  Let's hope for this!
  2. The MRI shows something.  SCARY, and we are praying the MRI shows nothing.  If it does show something we will have to consult with Dr. M and Dr. D to see if surgery is advised and when it should/could be done. 

IF (gosh I HATE IF's) all goes well, I'm hoping to push to get Dean released before Thanksgiving. His follow up on 11/21 is cutting it close (no pun intended) but if we get those sutures out sooner we may not need to wait for this and healing can continue at home.

IF IF IF IF IF So tired of IF.  But, we heard no bad news about his numbers this week, which we are eternally grateful for.

Oh, and HOW ABOUT THEM AGGIES!!!  WHOOP!  But what the?  still not ranked?  we beat the #3 team!  Granted on THEIR mistakes, but we capitalized on them!  Way to Go Aggies!

Wednesday, November 5, 2014

Update on Dean

So, here is the latest on Dean...

After finally getting some good news last week, we unfortunately got some "not so good" news.  I won't say bad, because we are still waiting to see what's going to happen through this week and next to say if it's bad or not.

We found out yesterday that Dean's blood work numbers, although the lowest they have been since he has been in the hospital, did not improve over this week like they did last week. If they don't improve over the next two weeks another MRI will be scheduled.  We are trying to get them to schedule it now so if needed we don't have to wait another week for the MRI.  However, they seem reluctant to do so for some reason.  If they don't schedule the MRI early he will have to wait another week or so for the appointment, which means he will have to be in the Hell On Earth Kindred over Thanksgiving.  We are planning on insisting they schedule for the week of the 18th if the numbers do not improve next week.  They take his blood test samples every Monday.

The problem Dr Z (internal disease doctor) is having is we don't have a baseline of non-infection blood work so these numbers may be normal for Dean. The numbers, which we don't know what they are since they use medical terms we are not familiar with, are apparently very sensitive and can go "up" for something simple like a sinus infection or UTI, so there is a chance he is okay to go home at this level after the 6 weeks of IV antibiotics that started October 7th.  The sixth week is November 18, the week before Thanksgiving (11/27).

His follow up with Dr D (the surgeon) is Friday. If we have to have an MRI after two weeks, AND it shows nothing, AND Dr D says his surgery wound is healing fine, then he may be able to come home, which at this point we will most likely insist that he's released. 

So, if you could please pray that the surgery wound is healing, and his surgeon is happy with the way things are going on Friday, and that his blood work is okay and they actually LISTEN to Dean and schedule the MRI when we ask.

Upside down Superman Jake. 
He was being really silly and wanted to show Dean, so I took this and sent it.

Anybody up for Monster Toast??? :)

Monday, November 3, 2014

Happy Halloween 2014

Well, this holiday was fun.  Getting Free candy (after buying more candy than we gave out) door to door is really great fun!  Jake is finally at the age where he knows what the holidays mean and what to expect, so he was really excited to be Captain America!  And, he brags to everybody he sees about it too!

Dean is doing well, we are going week to week at this point as we don't get results or any discussions with doctors but once a week anyway.  He has a follow up I believe this Friday.  I sure hope we have good news for the weekend.  We are praying he is home before Thanksgiving!

I just want to add that this was my first Halloween in many, many years that I didn't have a black cat.  Since we lost Pixel in May, I knew this holiday would make me a little sad.  He was my very special Halloween cat and as Jake puts it, he lives in my heart!

Jake got to wear his costume to school ALL DAY so he had fun and pretty much ate candy from the time he got up in the morning to the time he went to bed that night!

Captain America!!!  YEAH!  He gets the BAD GUYS and Has a SHIELD!

At school, one of his friends was dress quite like he was!
How cute are these two?!?

Let the fun night BEGIN!!!

Our neighbors across the street had Thriller playing.  Jake walked up to their house like a Robot Zombie, it was AWESOME!

First House!

Over Achievers! 

Under Achievers!  

This was actually quite common this Halloween.  We would go up to a highly decorated house and find a big bucket of candy waiting.  I'm assuming it was that the family was out Trick or Treating as well.  I hope it wasn't laziness. :)

So we went down our street, up and down another, and then tried one more street.  Half way through the 3rd street, Jake decided, he was finished.  So we headed home.  He did say OH, mommy, One More a few times.  And we would go to that house too.  His bucket was pretty full anyway.


We were also able to enjoy a friend of mine's son's wedding reception this weekend.  It was a formal Indian Wedding Reception and a ROCKIN PARTY!  Wow! That was a lot of fun!

A friend of mine got him this traditional Indian suit to wear for some pictures over a year ago. He finally got to wear it out!

The food was delicious, but OMG SPICY!

Jake dancing his way into everybody's hearts! :)

I hope all of you had a very safe and FUN Halloween!