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.
DEAN IS COMING HOME ON THURSDAY!!!

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

mmmmmmmmmmm

Pineapple upside down cake for Dean's Birthday

Gourmet donuts from Glazed 

Jake riding a zebra at the Nutcracker Market

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??? :)

Two weeks of Limbo

So, there is not much to report.  This has been a long and hard limbo between surgery and follow up surgery.  Lots of things happened and not much of which I can really talk about.  Just know that we do need prayers for guidance on some decisions, not with Dean and his health, other issues that have come up.  I hate to be so vague, but we just need support and prayer to help us through some things.  Dean is doing well, he looks great and is eager to get the follow-up surgery and get to healing.  So, we also need prayers for this second round of healing to go quick.  He will most likely be in the hell on earth Kindred for his birthday (11/14) but we are hoping and praying he makes it home the week before Thanksgiving.

His follow up is scheduled for tomorrow.  It's been two weeks since his last surgery, and it would have been only 1 week if the surgeon wasn't in a conference in Florida.  We also hope that his surgery goes at the time it's planned, which we don't know but last time his 4:30 scheduled surgery didn't happen until 9:30 pm.  He will be admitted for a few days at MH (bring on the good food!!) so the same crud we went through with Kindred will happen again.

The Kindred crud is this....
Apparently Kindred has a policy that if you are not back in your room for 24 hours for ANY reason, you are discharged.  The problem with this is we were told the surgery was a day surgery, in, surgery, and out.  We didn't know he would be admitted until we got to pre-op.  And of course nobody told this to Kindred.  Also, we didn't know Kindred discharged him until he tried to go back Friday afternoon (at 5pm of course when things are closed and people are gone). They actually told Dean he couldn't have his old room because it was occupied.  Turns out it was, BY HIM!  AND when Dean got back Friday, all his stuff was there, and his IV machine was still beeping from being disconnected when Dean left the Tuesday before!  Hell on Earth.

So, we do need prayers, pleas pray that this surgery is successful.  Pray that Kindred works with Dean BETTER and MH gets him back there to be admitted again by Thursday.  Please pray for fast healing, and again for guidance for the unspoken issues we will eventually tell everybody about but we cannot at this time.

In other news, what a horrible fall from GRACE!  Aggies??  What is UP?  Did you even KNOW you were playing a football game in Alabama this weekend?  HELLO???  UG!!!  From being ranked as high as 6 to not being ranked at all, this is horrible.  :(  Oh well, watch out Next Year SEC!  The Aggies are coming!  WHOOP!!!

Also, Jake and I got to have some fun this weekend.  We had a nice breakfast with Nonnie and Papa on Saturday morning at IHOP.  It's always fun to go have breakfast out every once in a while!

Then, on Sunday, Jake had been asking about going to the Zoo, which he does from time to time because we drive by it each time we go visit his Daddy.  And, the Weekends in October are the ZOO BOO, so he got to dress up in his costume and get candy and do some cool Halloween things!

On our way, we are READY!

Lolly pops are AWESOME

 

Monster Mural and Painting a mini pumpkin

 

Taking a break from all the fun

And, doing the Thriller ZOMBIE DANCE

Doctor's Orders

Well, it's been another tough week.  Dean's numbers for infection testing have stayed the same, which  probably means it's being caused by the small infection they found still from the MRI.

The bad news is we are expecting the surgeon to say he does need surgery.  Dean talked with his wound care doctor on Wednesday.  He said that since the remaining surgery spot is still not getting better, he suspects the spot on is bone that's infected is causing the problem.  He has suggested surgery.  Dean meets with his surgeon Friday Morning at 7 AM to get his opinion.  At this point, we are fine with more surgery, so we can get all this taken care of instead of going home too early and have anything linger and cause future issues.

The only hard part to grasp about all of this is the longer stay at Kindred.  Apparently one of the better nurses mentioned that some of the other staff complain about Dean being too demanding.  They apparently don't like that he requests to drink more water than half of a 6 oz cup every once in  while, and that he has requested to be turned every 2 hours.  If you read that and are thinking what we thought when we heard that, you are right.  Dean has not requested being turned every two hours HIS DOCTOR HAS PUT IT IN HIS ORDERS!!!!  So, basically, some of them are complaining that the doctor has asked them to do something, but they don't want to, so let's put all the blame on the patient and not do it as requested.  We also learned that if he asks the staff to do something later (like something private while he has visitors) they will put it in the computer that the "patient refused the care" and never do it.  This is a PERFECT solution to covering yourself for not doing your job!

I do just want to say that not all the staff are this terrible.  He has some really great people helping him, although they are few and far between.  There is even one guy that comes in all day Sunday to keep track of his Fantasy Football players and talk football with Dean!  He gets lots of attention when that happens.  Also, while Jake and I visit, Jake has 2 jobs.  1.  Lower and raise the head of Dean's bed when he needs it.  He LOVES helping!  yells, I'LL HELP!!!  Then listens to Dean when he says stop.  2.  Turn off the nurse call light when we either test it, the nurse comes in, or we accidentally click it.  However, this makes us nervous since the "CODE BLUE" button is right next to the cancel call button.  He is very careful not to push it.  HOWEVER, one of Dean's nurses at night accidentally pushed it!  Dean then realized how to get everybody in his room at once! ;)

On a much lighter note, the weather has been really great this week!  Jake and I got to play outside with Buddy.  Look how tall he is!  When we first got the slide, his head was not up to the bottom of that circle!  Now, he's almost as tall as the top! :)

He also has been helping out around the house, letting Buddy outside in the morning, and letting Jack out, and helping with the trash can!  He moved the trash dumpster ALL BY HIMSELF!  We are so very proud of him!!

 

And something that made me giggle, the Aggie CT who famously blocked the SMU player from running into Reveille VII has not only been in the news nation wide, but all the way to the UK!  Read this article for a giggle!

Brave Young Cadet Saves Lassie From Certain Death at American Football Match

My favorite part:

Nice to see that after years of Lassie saving humans, the favour is finally being returned.

This will be another busy weekend!  Have some plans to have a luncheon AND I've heard some really SUPER friends will be at the zoo this weekend, so we will be checking that out for sure on Sunday!  Maybe we will see you there!  And, to my UH friends - Shasta's birthday party is this Sunday as well!  Go Coogs!

Houston Zoo Event

 

The weeks have increased

I sure do wish I had better news to report.

After Tuesday's blood tests and visit from the wound care doctor, we have found out Dean will be in Kindred for at least another 2 weeks.  His numbers went up slightly, which did not bring up too much alarm from the doctors other than wondering why, but still not good news.  But, his surgery spot is getting better, even if it is slow going.  Anything getting better is good!

But, the care at Kindred and the food they serve is really starting to be hard on Dean, and me and Jake as well.  He has to continue to fight and practically beg for the most simple of daily necessities.  In fact, Wednesday morning his Tech came in put his breakfast on the tray and said I'll be right back.  A long time later, she came back noticed the tray was not touched and said, "Didn't you want breakfast?"  First of all, she should (1) know his condition and (2) know what it MEANS.  He actually had to tell her, no, I haven't had my breakfast yet because I'm a quadriplegic!  She said OH, I'll be right back.  Again, nurse talk for "I'm not coming back until you turn on the call light."  He had to do that, another nurse came in, saw the tray and right away offered to help.  Turns out this absolutely 110% UNQUALIFIED Tech was what they call a "agency tech".  Which means when the supervisor can't fill the schedule with the regular people who are employed at Kindred, they call an agency, and these people are not qualified to work there.

Jake had a hard time with me being upset at the nursing/tech staff last night.  So, I talked about it while in the car and Jake said as loud as he could "SO! SAD! NURSES!  I'm going to put you in time out even if I have to carry you!  I'm strong!  I'm VERY, VERY, (repeated very 50 times), VERY disappointed!!"   This kid is 1 in a million!  He really want's everybody around him to be happy.

To top all this off, the nursing staff broke Dean's glasses a couple weeks ago, broke one of the arms, but not so bad that he couldn't sort of fix them and wear them.  They are not real sturdy in the first place, and about 3 years old, but still, they broke them handling them too rough.  So, I was going to take them to our glasses place to get fixed and I pulled them out of my purse and the other arm had broken in my purse!!  ARGH!  We are replacing them, but it will take 10 business days or so to get them.  Let's hope our glasses place can somehow fix them.

Lets hope the next few days get better.