Remember Leah

While on my journey with Matthew, I meet a lot of special people.  I think most of them are sent by God to keep me strong and to help me understand that my problems and my situation is nothing compared to what others are going through.  My cousin introduced the FB world to Leah Helms.  She had a son born on October 26th, not long before my grandsons were born.  His name was Pierce, aka Baby Pierce.  He was born with congenital aortic stenosis.  I followed her journey with Pierce everyday. Her journey was what I would call fast and furious but to her it may have seem different....Baby Pierce fought from day one and he fought hard.  He had a lot of prayers from people everywhere that were praying for him.  Although I never met him, just knowing "about" him and seeing the courage he & his family had shown through their journey helped me put my journey back into perspective.  We were all so sad when Baby Pierce was called home on January 15th.  It is so heartbreaking to lose a child, but Baby Pierce had also lost a brother a few years earlier, so this was mommy's second little boy that God called back home.  For such a strong and courageous woman, I felt I needed to do something to show that I care even though I couldn't do anything financially for her, the least I could do it try to put a few of those memories in a scrapbook.  I know she probably gets tired of hearing "Oh you are so strong" or "You are so courageous" and has her weak moments just like everyone else but to keep holding on to God and to keep encouraging others even after requires more than human strength.  It is a superhuman strength that only God can give someone.  I don't feel I need superhuman strength right now but I did at first when Matthew was born.  I'm just glad I know where to get my super human strength  when I need it and when God calls Matthew home I will be able to say to myself "Remember Leah."

Matthew's surgery has been scheduled for March 30th.  He just had a seizure a few minutes ago and I'm hoping we don't have to change the date again because that will mean he will have to re-do the labwork.  Please say some prayers for him to not have any more seizures...

Here are some pages so far I have for Baby Pierce's scrapbook.  If you would like to add a poem or send words of encouragement, just email me. ckappler@cablelynx.com

Having some fun with my Grandbabies pictures tonight.

The Perfect Little Sneeze!

Just thought I'd add this video for your entertainment pleasure.  This is called the "Perfect Sneeze" by Matthew Sanderson.  His surgery has been postponed until March 30th.  That's if he has been seizure free and back to his old self for at least a week.  He had 2 more seizures this morning which makes a total of 10 since he left the hospital on Friday...

Postponing surgery. He had 2 more seizures this morning.

I will be calling to cancel Matthew's surgery this morning.  2 more siezures, make a total of 8.  He has not had this many seizures in several years.  I can't believe I'm still up since 3am.. watched a scary movie until 12 midnight! What's wrong with me???

I'll let ya'll know when the new date is.  I wonder how I will be treated when I call to cancel.  You never know.

Charlotte

Surgery may have to be postponed.

Hi Ya'll,
Matthew has had 5 seizures since we returned home from the baclofen trial on Friday.  This did not surprise me at all.  The stress he was under with all the poking and prodding, the change in seizure med times, dosages, etc just got the best of him.  I feel like it was partly my fault but the way it happened was so weird and quick...

I'll be calling the surgeons office to tell them we need to re-schedule the surgery. If Matthew has any more seizures.  The last one was around 2AM.  He was out of it most of the day.

Before we left for the test on Wednesday, I had given Matthew some milk of mag just to clean him out because I knew he would be doing a lot of laying around during the hospital stay.  He had a good bowel movement on Thursday.  When we got home on friday, his stool was like rocks.  The only other time they have been like that is when he was put on the robinul . Robinul is for drooling and if you take too much it causes severe constipation.  We ended up reducing the dosage and have increased water. That was 5 years ago.  Matthew was on an IV most of the time and he is Never constipated when he's on IV.  He gets plenty of water and also had given him grape juice.  What I'm getting at it that after all the medicine mix ups, I believe he was given too much Robinul.  After I thought about it, I remembered that I had to keep putting chap stick on Matthew in the hospital because his lips were so dry. 

I am going to re-write my "So Let Me Tell Ya About My Day" post in a more professional style and take it with me for the Nurse manager and Dr. Veda.  I am really nervous about taking him back without having these issues resolved.

Matthew is doing okay now.  He's listening to his MP3 Player.

As for me, I have got to get registered for college algebra so I can start Respiratory Therapy school , or nursing school this fall.  I have to go to CMMC for 8 hours to follow a therapist and that will complete the requirements to get into RT school . If I see I don't like RT, I'll do nursing.  That will mean I'll have to take the ACT over again for the 2nd time.  I raised my math subscore from 12 to 18 but lowered my overall score from 18 to 17. You have to have an overall score of 18 and a 18 subscore in Math!!  I am going to have to take some ACT preparation classes this.  That is a hard test. Definitely not the same test I took in 1994.

Meanwhile I have started eating like a pig again but trying to stop. It's definitely stress related. My hair has started to fall out again, way more than the usual.  Every time Matthew goes in the hospital, my hair does that.

I've had a few other personal problems that I can't even talk about  because anything and everything I say could be taken the wrong way.  Sometimes I wish I had a nasty foul mouth and spoke my mind and didn't care what others thought or said about me but I do care and I don't have a foul mouth so that's out of the question.. That doesn't mean I didn't "think" it though.  It just hurts.
 I wish there was SOME way that his surgery could be video taped.  I saw one guy on
Youtube that had his video taped.  Like this one. (Warning , it's graphic)

One major concern about the surgery is I worry that they will try to lay Matthew's legs straight out flat in front of him.  My husband, John, says well he'll have the pump so he can do that.. well NO dear. Matthew will be "getting" the pump.  His legs cannot be pushed down flat while he's getting the pump or after.  Yes, they will be looser but they are far from him being able to lay them flat and straight.  Remember that he has some atrophy from keeping his legs pulled up for over a year.  Atrophy means the tendons, ligaments, and muscles have drawn up, tightened up.  If you just push them flat down, you will end up injuring him because it will tear or sprain whatever muscle has atrophy.  So Im wondering how they will do it without pulling his legs down.  Does anyone out there know how that works? Doesn't matter is he is knocked out, those legs are not going down. The ligaments are not able to do that anymore.Understand?  So I have decided to get a big black permanent marker and write "DO NOT PUSH MY LEGS DOWN FLAT!!!!".


I will be talking to the surgeon, surgical nurse, .. all the folks that will be in there with him but I'm still using the marker.

As he gets older, the surgeries get scarier. Reason is because he is highly prone to getting pneumonia if I don't keep him moving, doing back pats... He is 62 lbs now and that is not as easy as it used to be. He doesn't do much more than just lay there now days.  He used to move his legs but he can't do that right now. Hopefully he'll be able to move them and I can get him back to the pool.  I just don't see how much longer he can lay around from bed to chair to swing and that's it.  That's why we have to get these legs fixed and THAT'S WHY MS MEDICAID NEEDS TO FUND THE MEDICAID WAIVER PROGRAM WITH ENOUGH FUNDS TO SEND SOME HELP OR I HAVE SERIOUSLY GOT TO MOVE TO ANOTHER STATE THAT IS SENDING OUT HELP.  I AM NOT GOING TO LIVE IN MS AND JUST KEEP WAITING FOR HELP, MEANWHILE HE'S LAYING AROUND DYING BECAUSE I DON'T HAVE ANY HELP AND THE PEOPLE THAT DO HELP DON'T UNDERSTAND THAT LAYING AROUND WILL EVENTUALLY LEAD TO DEATH.  All I want if for someone other than myself to give massages, put him in swing, read too, play with , move his legs, stretch him... I'll still do it, but I can't do enough.  He needs a lot more movement than I can physically give him..  Too bad he doesn't have any relatives down here that will come by a few minutes during the week to do that.  When Matthew gets 70lbs, I will be in another state one way or the other if we don't have some help.  If anyone reading this has a home attendant or nurse, please let me know what state you are in and how long it took to get help.  My aunt has called and said she will come over and help me move and change Matthew when we get home so I don't have to hurt him .. she is 64 and has a 100 lb handicapped child in a wheelchair and takes care of a mentally handicapped sister.  She is the only one that has called and insists on helping. She has a nurse for her daughter she got 10 years ago. She is my husbands aunt.  Sad that most of his relatives have not bothered to call or check to find out about him.  Sorry, I had a lot on my mind.

You'll see my words emphasized throughout my note. I am trying to help you feel the feelings & emotions I felt as all this was happening. Oh, and that voice in my head that tries to keep me from going postal on people was there with me the whole time. lol funny. He calls me "gal" sometimes. lol Here are some things that has happened to us in the last 2 days because of unconcerned and untrained people.

1. Made a detailed list of Matthew's meds, times, .. a first grader could read and copy it.
First meds came, no depakote.. had it down for 2 times a day instead of 3. Had to wait for doctors orders an hour when I had it right there in in suitcase. (no problem, it will get better)
2. brought me 1/2 of a drooling pill at 12 noon. He doesn't get anything at 12, he get the drooling pill with 4 other meds at 2:00. Just breath charlotte2. They gave me a crushed up pill at 5:30, said it was 10 mg of the baclofen. It was 20 mg of baclofen. He is only suppose to get 10. Breath in, breath out, let it go. From that point on i told them no crushing until I saw it first.

3. The evening nurse was about to give him his 20 mg at 8 and thought it was unusual for him to have it so close together.. good thing because he could have died.walk it out.. walk it out charlotte
4. I walked what seemed like a 1/4 mile round trip to the OBGYN waiting area to pay for a parking pass. They were closed for an hour because computer was down or something... it's ok, just be cool.
5. I walked back to the business office 2 hours later, they were open but didn't take the money or order for the guest trays anymore any more, I had to go to the cafeteria in the hospital part??? In the total opposite direction.
6. I walked to the cafeteria and paid for 5 guest trays for my stay, almost 35.00 bucks.
7. I didn't get the first meal until the NEXT evening.. the nurse called about twice. Finally, I called the complaint number and had two trays in my lap that evening.Eat both of them trays of food Gal, you need your strength. So I did!
8. I am JUST getting started.
9. Was told we could go home at 9:00 after we see the surgeon.
10. Surgeon says ok we have surgery.. blah.. now I have to wait on his nurse to come talk to us
11. An hour later she comes by gives me the appointment and says I have to wait on this other lady to come by. 2 hours later she come by tells me to go to anesthesia for pre-op work up before we go home. We're almost home now?.. well are we? Forgot, and do not have time to re-number this junk.. but we had to go to registration and register AGAIN for the surgery on Tuesday.. then they send us to anesthesiology.
12. We get discharged, the nurse takes out Matthew's IV and we go to anesthesia 6th floor children's hospital.
13. Anesthesia stops us in our tracks and said, Oh you have to take him to get lab work, in the other side of the hospital in the new children's clinic on 2nd floor. Throw some water on your face charlotte.. be nice, it's you, it's not them..
14 We get their they look like at us like we are crazy and not sure why they sent us to them. ok, roll your eyes charlotte, give them a dirty look then breath..
15. After they call to find out why we are there (after not listening to me) we wait another hour, they bring us in. snatch up your purse look em straight in the eyes, then breath..
16 REMEMBER THEY TOOK THE BLASTED IV OUT WHEN WE LEFT THE ROOM. Matthew has very thin viens. By this time he is wet, time for meds and to be fed. So I complained about having to re stick him and they are sorry & don't know why the surgeon didn't request the draw before we left the room... breath gal, breath!.. you know it's you,, its YOU.. not them! I only gave them 1 chance to find a vein and of course they blew the vein. Then they said they knew a girl that could get it that worked in ER so I fed and medicated matthew while we waited on her.AS soon as she walks in the door, matthew PROJECTILE VOMITS everything I just gave him. He is covered and me too. So back out of the chair on the table.. we both smell horrible..breath in, breath out, don't cry, clean up your baby. Get him cleaned up back in the chair, she finds a vein in his foot gets it first time. That's not your back you heard cracking.. it's just your imagination.. breath..
17. Now we are going back across the hospital to the 6th floor to anesthesiology.. have to go in a room that is so small, Matthew & his chair, me and the nurse couldn't all get in at one time.. lol.. That took about 30 minutes. Laugh charlotte, just laugh ,you are almost to home plate.
18. We make it home around 4pm rejoice charlotte! I just went to walmart, bought a straight talk phone. the cashier scanned it twice, voided, and I had to wait for the CSM to void. Got home to activate and she not only voided the charge but also the serial number so the phone has to be taken back. Go to bed gal, just GO TO BED!

WHAT THE HECK IS THIS ???STOMP ON CHARLOTTE AND MATTHEW DAY.. THIS IS JUST RIDICULOUS. OUR LIFE IS HARD ENOUGH WITHOUT ALL THIS EXTRA CRAP. LORD JUST GIVE ME STRENGTH. I REALLY FEEL i need to invest in some good boxing gloves and a punching bag.. I feel like the whole world has turned on me and MATTHEW I honestly don't know why. I AM GOING TO BED.

Who speaks for the kids in the hospital that have not advocates and YES there are many kids up there with NO ONE.

I wonder how many people have died because of stupid carelessness like I saw?
I am going to write a letter, similair to this one to the director of nursing. I will also be demanding that I either give the meds myself or that they bring it to me before crushing or mixing and let me ok it. When I become a nurse I will always check with the parents or caretakers first. I don't want to kill no one so no one should cop an attitude whenever I ask to see the meds first.

Here we go again in 2010

Well, we are backkkkk! Matthew turned 8 years old on February 18, 2010.T he last 3 years have been almost uneventful. Seizure are controlled to about 2-3 every six months! Email if you want to know how he's doing this!

For the last year, Matthew's muscle tone has slowly pulled both of his hips out of socket. We waited as long as we could before putting him through surgery. For the last 2 months his hips have really been bothering him because the femur heads are rubbing on the hip sockets bones. It is almost impossible to change a diaper because he keeps his legs pulled up close and tight. He is in pain any time he is moved.

The orthopedic doctor says he can either put them back in the socket or do a femoral head removal but he wants to see if a Baclofen pump will help first.

So now we are in Blair Batson hospital in Jackson, MS. We had a baclofen trial on Wednesday which involved injecting baclofen directly into his spinal colulmn. Had to be done inpatient becaues of the risk of infection and the fact they had to drain out spinal fluid to inject the baclofen.

If I had to describe the results in one word I would have to use PHENOMENAL! He was feeling no pain.. well maybe a little if we stretched him out too far or accidentally caused his femurs to rub the hip sockets. It even took away the spasticity of his right arm. So he is definately a candidate.

We're ready to go home now.. just waiting for the surgeons nurse to come by and do a consult and set up the appt. for the surgery which will be on Tuesday. Wish she would hurry up. 99 percent of our time up here today has been just WAITING on people.... Ya'll know what I mean.

So the plan is to take a video Matthew's spasticity before and after surgery. The surgery works right away. I posted a video of a guy getting a baclofen pump. It's not pretty and is graphic so don't watch if you can't handle it.

I'll update more on Tuesday. I wonder how much money it's costing MS medicaid for us to sit here in the room waiting on someone to come by and talk to us???


ANother update.. I earned 2 associate degrees and graduated May 15, 2008! since no one wants to pay me enought to pay a CNA with those degrees, I decided to try to go to nursing school. Right now, I have all but college algebra and will try to get in in the Fall of 2010.. I know Big Plans, Dreams, but I'll reach them, even if it's not this fall.

OH, my youngest son & his wife gave me 2 identical twin grandsons, Brendan & Brantley Nov-2009.. They are awesome... still don't quite know who is who sometimes..

Charlotte