I wanted to save this from my facebook before it was lost in the FB archives. I know I am not alone on this journey when I have friends that suppport me and encourage me when I'm feeling down. I opened a facebook account for that reason so I am now going back to that reason. Going to make a lot of deletions on the friends page.. I don't know why they call them friends, they never were..ha. Some have added me & never spoken to me. I have this blog for people that would rather just read and keep up with my life. So here's my Rant yesterday on FaceBook.

Charlotte Pugh Kappler I have to live with the fact that I am raising & loving a child I know is going to die before I do, I wake up every morning and several times a night to chek to make sure he is still breathing...(Kids like him just go to sleep & never wake up incase you did not know that) I DO NOT have time for games or the extra str...ess. I am closing the book on this one. I have to keep strong for Matthew. .
Heidi Lotthammer amen sister !!!!!!!!!!praying for you and matthew!!!
Yesterday at 1:01pm ·

Caroline Oates- Kelly I dont know who this refers to but i just want to say they will never be the person that you are honey. Your love for Matthew is amazing, but that comes easy because of who he is You have all our support here honey always xxx
Yesterday at 1:07pm · Helen Stamp Miko ((((((((((((((HUGS))))))))))))))
Yesterday at 1:08pm · Tina Kelley Atkins Do any of those "so called friends" know the true meaning of FRIEND?????

Yesterday at 1:13pm · Missy Buchanan Caroline said it the best! These special children are angels. We are so blessed to have them & remember God gives special children to special people.
Yesterday at 1:14pm ·

Andie Arballo Unless someone has walked in our shoes they will never know what it is to live every moment in fear of losing someone so precious and innocent!! I didn't sleep for fear Angel would stop breathing and I wouldn't be holding her when it happened!! Love Matthew with everything you have and enjoy him every minute of every day!! Don't worry what people
say or think because the only thing that matters is that Matthew knows how much you love him and that you know you are giving him a wonderful life full of LOVE!! God bless you both!

Yesterday at 1:25pm · Charlotte Pugh Kappler I am just trying to remind people that there are human beings under a lot more stress than they could ever know and things they say can harm that person a LOT more than they think. Chronic stress kills but it's not going to happen to me. .. sarcasm really stresses me out too.

Yesterday at 1:29pm · Andie Arballo I hear ya, I feel the same way! People should really stop and think about the things that are coming out of their mouths before they speak, words really do hurt! I hope whoever it was that pushed your buttons sees this and remembers to check their mouth! Hope you have a better day, love to you both!

Yesterday at 1:35pm · Charlotte Pugh Kappler Thanks Andie, I just get so stressed out because there are people that are so wrapped up in their perfect little lives that they don't take the time to see what is happening to their "friends' or blood relatives"they just don't care.. It's all about them... . Won't even take a few minutes a month, even a year to spend with these kids but won't think twice to do something or say something that will make things worse on the parents.. I am sorry now that I have complained but I don't want these people reaching out to me AFTER my Matthew has gone. We (people with kids like Matthew) need support & encouragement NOW not after he's gone. I am through complaining now. Hug Andie and Im so sorry about Angel. Wish I could be there for you.

Yesterday at 1:41pm · Jodi Park oh charlotte i so know what you mean ♥ ♥
from one mother to another with a special needs child
i heart you

Yesterday at 1:45pm · Charlotte Pugh Kappler That's why I am going back to the OLD reason I opened my facebook account.. to get support & encouragement from people that have kids like Matthew and also offer my advice from our experiences to people that need it. Thanks Ya'll
Yesterday at 1:50pm ·

Amanda Jayne Johal Clarke Charlotte honey, listen and always remember, what goes round comes back, this is so true, try and keep positive and focused and enjoy the special, precious time with your gorgeous Mathew, big hug chick xxx

Yesterday at 1:51pm · Sharon Sheagley He is worth everything too, Matthew gets the best love in the world. Anybody who does not have Matthew in their lives are missing Gods gift of life. I wish I could meet your little man, he sounds so wonderful. Not everybody gets blessed so much to take care of an angel, you are blessed Charlotte.
Yesterday at 1:53pm · Heather Schenkel Shaughnessy Aww, Charlotte, I too hate ppl . like that. I have found that my closest friends are some that I haven't ever met! You guys are the true spirits that keep my spirit up each morning when I sign on here.
I had someone call me Sunday with their "drama" which they caused mind you, and not ONCE said Hi or How are you?? Just laid their problems out
See More for me to fix.!! I cried later about that and Mike and I talked and realized someone like that is just not needed in our lives. You are so right to say what you said on all accounts. They want us there for them when they're not for us; and sadly you're right they will "try" to be there when it's too late.

You're one of the most AMAZING Mom's around and advocate so much for Sweet Matthew. We love you!! xxxx

Yesterday at 2:00pm · Andie Arballo You are so right the people who weren't there when I needed them to be aren't the people I want around me now, they should of come and got to know my little princess while she was here not come around now and say "oh I'm so sorry for your loss" I don't need their pity or their I'm sorrys!! My micro moms have shown us more love and support than my own family and for that I am eternally grateful to all of you!

Yesterday at 2:07pm · Charlotte Pugh Kappler Thanks ya'll. I know we all have rants like I do but I get so frustrated.. I am keeping my focus on Matthew but have also decided to continue to my goal of getting my RT (or nursing degree) I put it on hold thinking I may be able to help someone else for a little while but that's not the case any more.) I am going on with my degree, even if I have to move to another state to get help to take care of Matthew.Matthew is my priority and I want him to have the best and I can't do that thinking someone else is going to step in & help with that because it's not going to happen unless I go after what he needs and that's what Im going to do. I might be 48 years old but at least I will be a 48 years old with a nursing or RT degree, retirement, insurance, and full time attendant care help with Matthew in MY home. Not letting anyone or anything get in my way this time.

Yesterday at 2:10pm · Crystal Pigg You go Charlotte I am so proud of you and Matthew. You truly are an inspiration. Matthew is a beautiful little boy and he is so loved. I can't wait One day I will meet little matthew. I love yall so much. My Danielle watches over her friends on earth Daily!!
Yesterday at 2:39pm · Charlotte Pugh Kappler Thanks Crystal, I know she does. When I get my degree and make lots of money we'll have to meet up somewhere!

Yesterday at 2:45pm · Maria Orozco Awwww I know how hard this can be .... Im going trough some horrible things at the moment ...I wish i could forget ..I pray 2 God 2 give me the strength & clarity in my mind 2 not let these soo called friends mess w my peace .May God bless them...because unless they have ever felt the fear of ever loosin their bbs .Theres no way they could ever know what a liss mommy feels every day ... or how many times we thank God our bbs made it trough 1 more day!I'm sooo grateful 4 havin Alex in my life because he has made me the person I'm now ....He is the light of my life ! Thanx soooo much 2 every1 in my new family !!!without u guys , I dont think i would have much support from my soooo called friends ! I thank God 4 each & every1 of u ! Much love 2 all & ur bbs & all the Liss Angels' ! xo

Yesterday at 2:49pm · Helen Stamp Miko Charlotte- if they weren't there for me when I needed them most, then I have no use for them now. Maybe moving to Tn wouldn't be a bad move-- your mom, sister and daughter are there, right? Do you think John would be up for a move? I know I would love it, as then you'd only be about a 3 hour drive from me. LOL And you guys are ALWAYS welcome here at the lake.
Yesterday at 2:50pm · Grace Pugh Shonts And 7 hrs from me!

Yesterday at 3:26pm · Shawna Parker Cromwell-Snead Charlotte and ABMs, all I can say personally is that I LIVE EACH DAY. And yes those thoughts are always in the back of my mind, but if I let the depression win over me, I WON'T BE LIVING. So, I don't take for granted each and every day. They are blessings with Miss Kyleigh. And when the day comes for her to leave this earth, I hope and pray thatit is in her sleep, without discomfort and pain of the seizures.Each person's choice and reaction is very personal and individualized. I don't mean to offend anyone, just know I do have great empathy and everyone bares their own crosses. Peace & Love.
Yesterday at 3:28pm · Shawna Parker Cromwell-Snead Ok OOPS! I was totally off topic. Sorry Charlotte...maybe it will make you laugh! I did a flubberoo!
Yesterday at 3:29pm · Mary Sanderson I mlove you----this is mama

Yesterday at 3:34pm · Angela Christie Emrick Taylor u know what u should not b thinking negative

Yesterday at 4:22pm · Charlotte Pugh Kappler I don't think I'm being negative. There is no cure or treatment for Matthew's diagnosis. I just need to make sure he has what he needs as he gets older which is someone to help me care of him, insurance for myself so I am able to take care of him, and retirement so I can take care of him when I retire. Right now I have none of that. HE will always ...
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be 3-6 months mentally but he will be the size of his age so that will mean long term care. Im just making plans and thinking ahead. If I don't he will end up in a State home.

Yesterday at 5:51pm · Shawna Parker Cromwell-Snead Charlotte, I know it's challenging period! I pray the money will be there to pay the tuition. But if I didn't go to school now and finish, then I would be and a bad place that I wouldn't want to be. It scares me that I am single parenting it here...but you know what, even though I was married, I was still a single parent. Financially things are tighter now, but you know what, in another year, I'll be able to test for my LPN. That creates more opportunities for me to provide for my girls independently and have good health insurance for them. If I can do it, you can do it lady. xoxoxo

Yesterday at 6:06pm · Charlotte Pugh Kappler Thanks Shawna. I have my mind made up. CMMC cancelled so I went with UMMC for RT observation. Im going straight for the RN or RT.
Yesterday at 6:15pm · Jennifer Graham Hamen I love you
Yesterday at 6:24pm · Charlotte Pugh Kappler Aww, love you too.. only you guys can know how it feels. Hugs to you all. Should have put this on my blog!
Yesterday at 6:49pm · Ann Leese Lewis Charlotte, please remember that God will never bring you to anything that he wont bring you though. I will always be praying for you and Matthew. He is so special, but so are you. I knew that the first day we met. If you need anything just let me know. I love you!!!
Yesterday at 6:59pm · Charlotte Pugh Kappler thanks ann. I know I can make it through just about anything. I am just going to have to make things happen myself and stop waiting on someone to step in and save the day cuz it's not going to happen.lol thanks for your encouragement! Love you too!

9 hours ago · Vicki Bever Doze There were so many years when we felt alone when Jared was having so many things going on and when we felt friends and relatives probably thought, "He's your problem, you have to do it by yourself." We only had my husband's sister-in-law and a couple of great friends who offered once in awhile to help us out.
May Heavenly Father bless Matthew and his family who love him so much.
6 hours ago ·
25 Days after surgery and Matthew is almost healed up completely. He is a trooper and is one very courageous little boy. He's had his pump turned up 3 times and is at 65%. Today was his first day without having any oral baclofen. He'll still get the 10mg at night until we get the pump turned up again in a week, then no more oral baclofen. He is a lot more alert and responsive.. He doesn't pass out every time he's in his chair. He's still sore and whines at night if I don't get up and move him at least every 2 hours now. The incision on his back is almost healed. Photo makes it look back but it's not. Finally, I feel we have made the right decision. He is NOT in any pain anymore from his hips being out of socket. The muscles are have loosened up enough that they are not constantly pressed again his hip socket. The neuro says there is NO reason for him to have a hip surgery if he's not hurting. There are kids like him that can't walk that have hips out of socket and live with it. I will take him to the orthopedic surgeon here and see what he says. It's obvious that having the pump has relaxed him so much more that he is no longer having constipation problems. We've had to give him babylax, just to get him to do anything. Now we are not having to give him anything. I think he's enjoying that part a little too much.. 3 times already today. lol
We are doing the happy dance.. Thanks for all the prayers. If it were me that had this surgery I would probably be walking around whining and feeling sorry for myself. You know Matt only shed real tears the first week and after that he just whined to let us know he was still hurting but usually stopped after we repositioned him or gave him pain meds. He is my hero!
The last pic is one we made for his PenPals in Ellington Connecticut when his teacher was here on Tuesday. Now, If I can just get it in the mail!

2 weeks

1 week

Matthew's doing 99% better today.  We are able to move him without him crying. He actually has not cried since we came home from the hospital. His spinal incision looks good.  Not dried up but filling in & closing nicely. He's still on antibiotics for 8 more days.  His spasticity has DECREASED dramatically.  He's not even having pain from us rolling him over like he did before the surgery.  Once this incision heals and we are able to get him in the whirlpool, I believe we are going to be able to get both of those legs straight out! See the picture?? That is a big difference.  I am feeling pretty good about the decision to get this pump.  It was a hard decision but I am see great results and the pumps not even turned up to the max setting for his age yet.  He's also not sleeping all day and looking groggy since he's not on the oral baclofen any more!
 I thought I would share some more of my precious grandbabies pictures that I edited using paint.net.  It's a free software by google. I love it.  The first three are Makenna.  She  will be 3 in July and lives in Church Hill Tennessee.

Brendan, Their daddy Korey photoshopped in the middle and Brantley on the right.

(This is Brantley, not Brendan)

First, I have a new song called "One Believer" on my play list on your right. You should click on it and listen to it while your reading the blog.. the lyrics are beautiful

Looks like we will be going home tomorrow... incision is not infected and looks good. He's been on some strong antibiotics and kept off his back for a week.  It really ticks me off  that his doctor didn't tell us or the nurses right after surgery that until the incision healed  is was extremely important that Matthew not put any pressure on his spinal incision and he needed to sleep and lay on his sides . The first four pictures are right after surgery and the next day. We were not told until the evening of day two, not to let him put pressure on his back.  I even put him in his wheelchair.  There was leakage when they removed the bandages in the hospital at the lower part of the incision.. that's where it all started.  The incision's glue wore off and although I did the best I could the whole incision ended up pulling apart a little so it's taking a lot longer to seal up and dry up than the frontal incision. So it never was infected, never got infected. We were just here to make sure it didn't get infected. 

A lot of crazy stuff has been going on up here.. it's scary,.. medicine dosage mix ups, IV dosage mix ups, information mix up... just scary. I'm just glad to be going home tomorrow.  If he lays around here much longer, he's getting more and more prone to picking up the "house" pneumonia!

I'll write more on that when I get all my notes together. Meanwhile here is what Matthew's incision looks like now; brusing is fading and it's filling in.  Nice and pink.. no red..
Now look at how good the pumps working since it was turned up!
I was able to get a pillow a between his legs. He tolerated it for about 30 minutes then he wanted it out. We are almost there with the pump dosage.. won't be much longer. We had it turned up 10% more since we've been here.

 My beautiful, courageous little boy.
Here are some Sunsets I took from our hospital window

(Pic 1 & 2 is what the incision looks like now.)

That spinal incision did not seal up all the way before the glue wore off so I took him to the ER since I could not get an appt.  The neuro surgeon on call talked with Dr. Hannigan and he decided to put him in because he wants to clean it up and  re-stitch it.  It's not infected but he want to make sure it doesn't get infected until he can get to it to clean him up.  It is really bothering Matthew. He's crying when he's moved. He was actually getting better with the pain but I can tell he's going down if they don't get it fixed.
(In picture on left, this is left over bruising from March 30th.  Don't know what the heck they did.. The IV wasn't even in this hand.) Also bruising on his scrotum.) Veda says he could have been lying wrong on his hand when they did the surgery and a blood vessel could have ruptured in his scrotum when the line was being ran of the cath could have caused it.) The world may never know.

Since we are up here, I am going to call the neurologist and see if they can come by and turn his pump up since we are already in Jackson.  It is scheduled for Friday but it won't hurt them to stop by over here and do it.

 When we were admitted, it was straight from the ER so I was not prepared at all. I had only a days supply of everything.  Did not have any of Matthew's meds with me. They had no orders for meds because I didn't have the meds or dosages with me so we have to wait until John gets here.. around 10PM.  I didn't even bother to ask what took so long.  I have no motrin so we have to wait on orders for that.
I asked for Motrin at 5AM, still don't have it.  I asked for Loritab an hour ago,, still don't have it.  I am ready to pack him up and take him somewhere else.  I am going give them 10 more minutes then Im calling Dr. Hannigan's office and telling them Im packing up and leaving with Matthew if they don't give him some pain meds.

Dr. Hannigan just came in.  He said his incision didn't look that bad at all but they would fix him up and put him on antibiotics.  He would check on the pain med.  Wonder how long that's gonna take.

I had a lot of help with him last week.  Mom, dad, Mary, and Makenna came
down from Kingsport, TN.  Makenna was a helper too, in between the times she was spreading her "beans" (jelly beans) all throughout the house.  She is my granddaughter, Matthew's half sister.

8am. and our nurse already left so I buzzed the new nurse and finally got the Loritab and Motrin.. Yes, she just left without making sure her patients were taken care of before she left or even relaying the information to the new nurse... what a sorry excuse for a nurse.  She already had orders for the loritab.. she could have at least brought that to him.. Like I said, I still don't like Holland but I have to be here because I love Matthew.

The neuro called 10:03. They are going to come in and up his pm 10%.  I don't understand why he is so much more pain today.  It seems to be coming from his back.. I don't know.. It could be his hips.. He cries every time he wakes up.. even with the pain meds. Poor baby.. I try to make things better and this is what happens.
Last photo is the incision in the front.  You can still see the glue is holding it together well. Bruising is fading. 
Matthew is doing better. A lot better today... I guess.  He just got sick right after we put him in the bed but I read that was normal after a surgery like this one. He gave me a scare when the spinal incision began draining last night but it was not spinal fluid.  It has almost stopped now.  He is still sore but every day I can see him getting better.  He has an appointment Friday to get the pump turned up because his legs are very tight. He's not getting enough pumped in right now.  The original appointment was not until July but I knew that was NOT going to work. The nurse was shocked at the low dose he was on and was glad to get us on in.  My mom, dad, daughter, son and granddaughter have been down from TN and NC since we got out of the hospital.  They all have been a tremendous help.  I'll hate to see them go home this weekend. Not sure how I'm going to handle that.  But Matthew is getting better.  Just had a reader comment that her child's bruising & incisions were not nearly as bad as Matthew's.  I will certainly be finding out why his were so bad.  Matthew even has bruises on the top of each of his nuckles on his left hand when the IV was in his left hand. The bruising on his scrotum has faded.  He has a bruise on his inner ankle. I think that's from laying on it too long or being pushed down on during surgery. I would pay a lot of money just to have been a fly on the wall during surgery with a video camera.  (Yes, they make them that small. lol )

Check this out.  Matthew has a whole class of really smart 4th grade kids from Windermere Elementary in Ellington Connecticut that adopted him as a penpal.  I think they are around 9 years old.  Cannot believe how great they are at grammar & spelling. Some of them write better than I do!
He received a banner and some beautiful cards with nicely written letters to Matthew. Some of the cutest had sentences like, "Are you really sick or just a little sick?", "I will put all my thoughts into you. I will think of you every day", "I  hope you get better as soon as possible and get out of the hospital. I don't want a new friend to be in the hospital", "I really, really, really, hope you get well soon", "Don't get upset if the hospital food tastes bad", I had pneumonia in September and the food tasted awful, disgusting, and gross!","They should treat you like a prince or king in ther! Even the ruler of the whole entire word!" "I will definitely make sure my family and I will pray for you. I am positive that everything is fine.", "I'm trying my hardest to pray for you and pray for you," I hope you like the hospital food because sometimes it's not that great."

These are just a few that I picked out but each one was equally as beautifully written and just as special to us as the other.  The art work was phenominal! Wow. I am going to upload some after I do some editing

It really is a blessing for us to get things like this in the mail for Matthew.  There are a lot of people that don't see him as we do. As a whole person.  Sometimes people will walk up and talk to me and not even say anything to Matthew.  Not all of the time but a lot.  Just because he can't speak back or see, they think he won't know the difference.  I have news for all of those that pass by without saying anything. HE DOES know the difference. You see how he is smiling in this picture? Because his great grandma ruth is talking to him after his bath. He knows his ggmaw Ruth! But he can't know you if you don't talk to him and let him hear your voice.

So what I mean to say is there are not a lot of kids or adults that would do this for others. It takes a lot of effort.  For years, I have always been the one to initiate card making for sick friends, family, or deployed military. This is the first time someone has done something like this for Matthew.  So you see why it means a lot to us and Matthew. We are going to make one big book out of all the cards.

We got home around 12 noon today.  It's 10:30 pm and Matthew is stretched out, doing amazingly well, all things considered.  He was sent home with a prescription for Loritab for pain and Omnicef as an antibiotic. He is still taking breathing treatments to get rid of the residual coughing and pneumonia. It will take another week to get him completely over it.  Poor baby can't get in the whirlpool until his incisions are completely healed. Especially the one on his back used to thread the line to his spine.

I am still amazed at how good he's doing.  He's still in some pain but the loritab helps with that every 6 hours or so.  Thanks to a comment left by one of our followers, I believe the bruising on his scrotum was caused from the catheter that was used 21 hours after surgery. She mentioned that catheters may cause that and I believe that's exactly what happened when I think about it.  They drained 200 cc's of urine he was holding on too and It looks like the nurse went to far with the catheter.  I didn't know that could happened. He's only been cathed one other time in his life.  After researching, I believe that the nurse was not trained well in that area so I will be calling the hospital's fifth floor nurse manager to let her know so this doesn't happen to another child.  Only time this happens according to web MD is when the catheter pushes on the wall of the the scrotum and the catheter should not go that far. My poor Matthew...

I have pics of him stretched out but way too tired to upload tonight.  I have all of my family except my sisters down for Easter and will have plenty to upload tomorrow. I'll have all the grandbabies in one place and am going to take millions of pictures!!
While cleaning Matthew with the top light on I noticed a bruise on his testicular sac right under the posterior portion of his penis. How in the world can there be a bruise there? Doesn't make sense. Probably something caused by carelessness, moving, rolling.. I just don"t get it but I will be letting them know about it.  He is lucky to come out any surgery much less a major one.  Why can't people be more careful and concerned?  This is not the first time things have happened caused by carelessness of someone in the operating room that was totally unnecessary.  I wonder if they video tape the surgeries. I want to know what happened.  I'm going to research and see if there are chances of testicular bruising during the surgery.. I don't recall seeing that before. I am angry

Matthew pneumonia is cleared up but of course it will take a good week to get him completely over it. He is still in pain, day 3 after surgery but nearly as bad as day 1. Each day gets a little better. He has some extreme bruising. I was aware that they had to make a very long incision for the pump but not made aware of how they run the line from the pump to the spine. Take a look at these pictures.. Looks like he has a bruise belt.

He is still in pain but it is definitely less painful everyday.

The doctor wants to keep us one more night to watch for infection because he had been running fever.   More later.