Tuesday, August 28, 2012

More Prep


Today I made this for Matt.  I have been wanting to make a car mat for a while.  We have a dinosaur mat that Matthew loves.  A hospital trip in our future finally pushed me to do it.  Tomorrow I will probably make another one that can connect with it.  I showed Matt what I was making, he grabbed cars and couldn't wait to play with it.  I kept telling him it wouldn't be done for a while.  When he wakes up tomorrow he will be so excited!
Still no surgery date set.  I haven't heard back from the surgeon.

Car mat and dinosaur ideas and templates came from this amazing website.

Monday, August 27, 2012

Still no date!

This morning the first call I made was to the surgeon's office.  I still didn't get to talk to the scheduler.  Instead she had someone else tell me that I needed to schedule a follow up.  WHAT?!?!?!  If the doctor had wanted to schedule a follow up he would have done it while I was at the appt.  The nurse was surprised she wasn't scheduling anything but the reason was because he wanted me to call the tell them what surgery and schedule it.  I really think the scheduler just doesn't like me.  I might be paranoid but she wouldn't even get on the phone herself to tell me that I "needed" a follow up.  GRRRR... I just want this over with.  This summer has been so hard.  I feel so bad that Matt has to struggle everyday.  He is so thirsty   It is awful he is waking up begging for water.
I left a message for the doctor who is out of the office for the week.  I hope he calls me.  I really don't want to wait until Sept 14 just to tell him my decision about the surgery.
I am also frustrated with mother's day out.  The process shouldn't be taking this long.  I am sticking to it because I know Matt really wants to go.

In preparation for surgery day I made some slipper socks.  I was going to go buy some but Matt has a lot of socks he can't wear with his braces so I thought I would see how it goes making them.  Plus I didn't know if it would be easy or hard to find cute ones in Matt's size.


Some turned out cuter than others.  Just want them to do their job.  
I doubt they will be used other than in the hospital. 

Matt's unblemished belly.  I didn't think I would feel sentimental but I am.  
Especially doing the fundo.  His little belly will have 5 holes!!!!  
I hope mederma will help heal the fundo scars.  I love his little belly. 


Friday, August 24, 2012

Waiting....

Tonight I am trying to forget about how frustrated I am.  Between 5-6 tonight I was so mad.  I just wanted to scream really loud.

This morning we saw the surgeon.  (See rambled post below) He was nice enough, he is leaving decisions to me.  Since he wanted to give me time to make the decision he didn't schedule the surgery.  He told me I needed to call his scheduler as soon as possible.  When the nurse came in with the appt notes she told me again, call as soon as possible to schedule, then she looked at me and asked if I could call today.


As soon as I left, I start making calls to get other loved ones opinions on the matter.  With in an hour I call the office to schedule.  She told me I got the information wrong and she would call me.  I tried to explain to her many times that I had to decide what the procedure I thought was right, and call her to let her know.  She wouldn't listen and told me "when the notes come in later today she would call me to schedule." 

I wait till 2, I called her back.  She wasn't in the office so I leave message being told she would call me today.  I call again at 4, she was on the other line, the person taking the message said she would walk it over to her and she would call me back today.  I called as a last ditch effort at 4:50, I was told she is still returning calls and I will get a call back today.  

6 PM - NO CALL!!!!!!! 

I was really hoping to have the surgery scheduled.  I am ready for the g-tube pushing liquids is hard.  Matt is thirsty but he hates to drink anything other than water he tries to sneak.  He begs for water, he wakes up in the middle of the night so thirsty.  I hate this!   I also have plans for September, I am missing scheduling play dates, just waiting to find out when this produce will be.  More importantly this leaves me all weekend to agonize over my decision. If it was scheduled, the room and the surgery time would already be booked.  I would just move on.  Now I get to review it over and over again....  GRRRR!!!  Anyone who says just put it out of your mind either doesn't know me or hasn't' been through this.  

My Decision.  

I think I have made my decision and I am semi comfortable with it.  I am going to do ahead with the nissen.  (I think) My biggest concern was that it was being referred as a general surgery.  After many questions with the surgeon about weather this was the right decision in Matt's case he agreed it was. 

We went over the pros and cons.  His statistics seemed a littler higher than the ones I have read.  He really thinks it is the best decision for Matt.  He said the other option is to do a J tube, but he doesn't recommend it because with a j-tube he will most likely be on continuous feeds day and night.   

I really didn't know that acid reflux will probably get worse after adding the g-tube.  It is already one of the biggest factors in Matt's sleep issues.  At this point in Matt's life he needs a lot of sleep.  If he doesn't get 12 hours he is a mess!  Some days he needs a lot more than 12 hours.  I don't want acid reflux getting worse and go back to 4 hours of sleep or less a night.  

I hope I am able to make peace with this decision over the weekend. I also hope I can get it scheduled soon.  I am ready.  I would love to be able to go to the mito social in September, but obviously this surgery is a big factor.  

Tonight Dragon started continuous feeds.  I don't know if it will last, but I am hoping it gives Matt the idea. 
It really started because he realized the medicine bottle would stay in the syringe. 



rambling after the surgeon visit.

This might not be coherent, it was my general thought that I posted to my mito group. Surgery still isn't scheduled yet, I called her and I am waiting for a call back.  I will try to post a more coherent post tonight.

We saw the surgeon today it was a lot like Kyla had said. I was nervous he was going to question me as to why I thought Matt would need a g-tube, or he would say Matt wasn't too underweight and he would want to wait. I went in and he said that he believed that the GI and primary do their job and when he is recommended to do a g-tube he goes off their recommendations. We talked about the g-tube, it will of course be a PEG tube to start and then changed to a mic key balloon. We talked about the muscle biopsy and he said that he has never had a muscle biopsy processed wrong. So I can hope that will stay the case. We talked for a LONG time about the nissen. He really recommends it, especially in Matt's case. He talked about if they have to go back and do it later, they have to take out the g-tube and do another incision for another g-tube. Plus, you have to go back through all the healing. He told me he was not in the business of selling surgeries and it is ultimately my decision. (I really appreciate that, he also told me to think about it and call his office to let them know.) I am probably 50-50 right now, maybe leaning towards the nissen. So much of my wants to say no, but there is part of me that thinks it might be necessary and I don't want to do it later. It is such a hard decision. I really didn't know acid reflux could get worse once the g-tube is placed. I am having a lot of anxiety and I want to make the right decision for Matt. I don't know if he has motility issues, they didn't see them on the swallow study. He does throw up sometimes if he eats too much, but he normally throws up randomly. The surgeon also said it would help if it is CVS.

Thursday, August 23, 2012

12 Hour Countdown

We see the surgeon in a little less than 12 hours.  Matt is already asleep.  This week has been a big sleep week for Matt.  He has been sleeping 14-16 hours instead of 12.  I am a little nervous about how tomorrow will go with only 12 hours of sleep.

As a side note Matt fell asleep faster tonight than ever!  He usually gets tired before his bedtime, but we try to keep him on a scheduled bedtime. After he gets tired he just get hyper, but I don't want to wake up at 5 am so we wait.  Today he was only awake 8 hours and when I gave him his night time meds he was asleep within 15 minutes.  I wasn't expecting it, usually at that time I start his shower and story time, so I feel bad that he is asleep on the couch.

Notice how Dragon is never far away.  He also still has 
his wings on that we take off at night. 

I am ready for the surgeon appt to be over with.  I really hope he agrees to a g tube, and disagrees with the fundo.  I am so ready for a g tube.  Matt drank 8 oz today and 4 of those are through a syringe with his miralax.  We have gone 3 days with out a BM, hoping to have one tomorrow.

I will update tomorrow to let everyone know how it went.  Such an early appt, I actually called today to confirm the time making sure I hadn't written it down wrong.

Tuesday, August 21, 2012

nissen fundoplication?!?!

I started doing research on g-tubes after talking to Matt's GI when he said we will do a swallow study if we find something wrong we will go ahead with a g tube.  I did a lot of research but did not come across the term "fundo" until the morning I was going to the GI to talk about the swallow study results.  That morning I looked up what it was and saw it was old fashioned and not generally recommend.

We saw the GI and he recommened a g-tube with a nissen fundoplication.  My gut reaction was no, I don't want to do that.  I came home did more research and I still thought no.  As I do more research I wonder should the answer be a no?

My son is generally healthy right now, he has these blibs that cause problems and the reason is still unknown.   The main problems are neurological, leading into the neuro-metabolic area.  This year we have seen lots of neuro-muscular issues.

There is a good chance my son has a degenerative disorder.  Everything I know about metabolic disorders is they don't get better especially if they can't find the cause.  Also, my son's first symptoms started at 14 months old.  There is also a chance that he could be slightly affected his whole life.  (I don't know how much of a chance this is, but I know it is there somewhere.)

The bad...

I don't want Matt to have more eating issues.  He is starting to like to eat and it is nice.  He loves donuts and he really likes pizza.  It would make me so sad if he couldn't enjoy those anymore from a surgery.  I know there may come a day on his own that could be taken away.

It is major surgery.  It is very invasive and it takes a long time to heal.

A longer hospital stay - ugh.. no one likes to be at the hospital.

A longer recovery.

It might not work.

The Good?!?!

It might help.  He might not be in as much pain from acid reflux.

Matt does have really bad acid reflux.  He takes an adult does of nexium. It seems to be working, but his diet is very limited and the things he eats are not big on causing acid reflux.

If I do it now when he is healthier I won't have to do an even more invasive surgery because of the g tube later if he starts to really need it.  Right now he has penetration/ some aspiration with thin liquids, I wonder if later on this means a higher chance of aspirating stomach acid.

This is really hard decision.  We see the surgeon on Friday.  I want to know what I am thinking before I see him.   I asked the feeding tube awareness page and two post scared me.  One said the surgeon told them the only parents who didn't let him do the fundo, their child died because they threw up in theirs sleep, the parents didn't hear it and it killed them.

The other person didn't do a fundo but now they are having to and she said  " we talked to our surgeon he said that there is more risk because they have to go around the tube and possibly detach the stomach. That is why they like to do both at once instead of waiting and her 1 1/2 hour surgery turned into 2 1/2 hour surgery." 


 I really don't know how to make this decision.  I am leaning toward no, but I don't want to have to do it later.

Sunday, August 19, 2012

Sometimes I forget to mention this.

MY SON IS AWESOME!!!!!!  

Everyday I feel truly blessed to be the mom of such an amazing son.  I wanted him so bad, and I am so thankful to have him in my life.  At times I forget to tell people this.  I forget to write it on my blog, I get lost in the outside problems that I forget to tell people how awesome he really is. 

Matt is funny.  He is venturing out on telling jokes.  I can't understand most of the jokes, but the punchline is always "clownfish"  then he starts laughing, "isn't that funny!" Love it!!!  

Matt loves dinosaurs.  He goes back and forth on how much dinosaurs consume our world.  At times he eats, sleeps, and plays dinosaurs.  He makes the cutest dinosaur noise you have ever heard.  I just tried to get in on video but the battery is dead.  I hope I remember when it is charged.  

Matt loves cars.  He plays with cars all the time.  He has even started to ask for them to go in the bath tub with him.  Every night two cars go in the shower with him. They get washed and dried and tucked into bed.  Where they seem to stay because we have so many cars they just get forgotten.  His favorite car is "shark" car.  It is a car that came in a happy meal a few years back.  It had a little guy that snapped into it that is now missing.  This car is super fast and can swim.  Also, for some reason green cars are the fastest cars.  

Matt is such a cuddle bug.  He is so full of love.  He loves to say I love you, sing loving songs, he loves to cuddle and hug.  He is very equal to, when asked who do you love more, mommy or daddy, his reply is always "mommy and daddy".  

Matthew knows he is loved and talks about the people he loves often.  He also answers for them.  When someone asks who wants something or who did something Matt always answers.  
if good,  "I do, Mommy does, Daddy does, Granddad does, Drake does"  He recently added Dragon to this.  
If bad, " I didn't do it, Mommy didn't do it, Daddy didn't do it, Granddad didn't do it, Drake didn't do it, Dragon didn't do it.  We ask sometimes did Zeva do it?  (Zeva is my husbands bird) the answer is usually yes or silence.  He won't clear Zeva's name.  

Matthew loves to win.  He is more competitive than anyone I have ever met.  He even says "I need to win".  We do work hard on good sportsman ship, but we also use it as a motivator.  

Matt has gotten into art work lately.  He draws a lot and always assigns people to his work.  He loves to make and give kites.  He loves to decorate with stickers.  I am really glad he is not possess over it, so at the end of the day when I am cleaning his art station there isn't a big fight about the majority of it going in the trash.  

Matthew is cute.  He isn't just cute on the outside, which is he beautiful.  He has a really cute personality. Even in his anger he is so very cute.  He makes the cutest angry face.  He always says the cutest things.  His therapist have always loved his personality.  When he was younger and he didn't have many words he cursed a therapist out in numbers, He started yelling and pointing his finger, "One, two, three, four, five, six, seven!!!!!"  He said he had never been cursed out in numbers.  


He is working on being sneaky.  This might not seem like an amazing quality, but I love to see how his mind works.  I took away power rangers recently.  I was never sure I wanted him watching them but he found them through netflix on his ipad and fell in love.  I took away netflix, about a week or two after I took it away he took my phone went out of my sight and started watching power rangers on my phone.   I loved seeing him grow his independence and I love to see him working on his sense of self.  

Matthew is so very smart.  I think some people might miss it if they are not looking.  Matthew is so incredibly smart. He can figure things out, and he knows when things are not right.   When Matt was 2 and they did a non verbal intelligence test it was amazing to see the way his mind worked.  The doctors in the room just sat there amazed.  They had never seen anything like it.  Even as it got harder he would  get to the last tile and if they didn't work he would figure out how to make it work by going back and correcting other answers.  His non verbal IQ was off the charts.  I think it was in the 160's  It is written somewhere, but I remember them looking at the chart and having to do the math to see where Matt's IQ was because it was literally off the chart.  

These are just a few of the things that are so special about Matty.  He amazing child!  I love him more than anything in the world.  I would do anything for him.  


Friday, August 17, 2012

Dragon

Yesterday Matt got his tubie friend.  I ordered it early thinking it would take longer to get here, but Dragon arrived early to give Matt lots of bonding time.


Matt was  very excited to get a package!  


He was very excited when he saw it was a dragon. 


Upon further inspection he noticed it had a button.  We have talked a lot about these and he had seen pictures, but it was the first time he has seen it up close.  He named him Dragon.


I showed Matt how to feed Dragon.  


Then I showed him how to give Dragon his meds. 

Matt really loves Dragon.  He has been close by for the last two days, a
and Matt has even fed him with out my prompting. 

I feel bad Matt got his tubie friend so early, I really thought it would take much longer to get here, because they ask you to give plenty of notice.  Those people are on the ball.  They are also incredibly nice.  We must have sent 10-15 e-mails between us.  It is such a great program.  My husband has been very nervous about Matt getting a g tube.  When he saw Dragon, he picked him up, we talked about how feeding works, he was a little freaked out that the button can move, but over all I think it helped make him more comfortable.  He even said make sure to take that dinosaur (I guess he didn't get the memo it is a dragon) to the hospital with you.     It will be really nice to show friends and family to help take away some of the negativity.  I really never realized how the world feels about feeding tubes.  


At the end of the night Matt fell asleep with Dragon.  This bed is in our room, he has a firetruck bed in his room, but he sleeps better in our room so he has his own bed in there.  We really don't make him sleep in front of a dresser in his room. 

Thank you Tubie Friends!!!!  

He also has a g-tube pad donated by Patchwork Peddlers , it is so incredibly soft.   I ordered some from 
Tubie Whoobies  because they are so cute, but if they are not as soft I might by a few more from Patchwork Peddlers, but I know she is recovering from surgery and is probably very backed up.  

Thursday, August 16, 2012

Waiting.

     During the GI appt I realized maybe I don't go to a very good GI.  I like him and he is nice enough but nothing is ever a definite with him.   Since the swallow study didn't show aspiration he was thinking maybe we didn't have to thicken liquids and told me to talk to Matt's speech therapist.  I spoke to her and she said that any liquid going down his windpipe is a bad thing, even if most of the time he is able to get the liquid back up and she wouldn't give him any liquids that were not thick.  (The exception I have been making to that rule has been meds and 2 oz of water given to him slowly through a syringe with his meds, it is hard to break that because that is how he gets through med time is with a little bit of water)
     The GI is referring us to surgeon for a feeding tube eval.  He set up the appt for an upper GI mainly for anatomy.  I am not sure what to expect from the surgeon, I know he gets to make the final decision for a feeding tube.  At this point with the daily struggle with Matt I am ready for a feeding tube.  Matt is so thirsty. He goes days drinking as little as possible, then he will break down of a day of drinking a little more liquids and the cycle will go again.  His body is not running well right now, he is even more tired and more irritable.   I just know he is so thirsty 
     We had the upper GI last Thursday, the barium from his swallow study a week before was still in his system.  Not sure if it has passed.  He has only had one BM this week, I don't even know how to get miralax in him, he doesn't usually like miralax but will drink it, add simply thick and it is a whole other problem.

Sunday, August 5, 2012

Tomorrow we see the GI doctor

I am ready for this visit, this weekend has been hard.  Matt does not like simplythick, I don't care if you can't taste it, he doesn't like it.  It has to be hard to suck up though the straw, I see him struggling with that.  It is also so hard to find containers to give it to him in.  Right now we are using the shake bottles and putting a straw in it.  I am mainly giving it to him for a few hours, throwing away most of it, washing and repeating.  He is no longer asking for juice or milk.  He will go grab three water bottles hand them to me and say, "this one is for you, this one is for daddy, and this one is for me.
Everyday I have been giving him a little bit of thin liquids, I don't want him to get dehydrated.  I have also tried to make the liquids a little thinner by adding more liquid than 4 oz.  I don't think it is a good idea because I think juice gets to be about the same consistency as pediasure which is the liquid we saw the penetration with.
Wish me luck tomorrow, I don 't know what the right answer is.  Feeding tube keeps swimming around my head as a hopeful answer but I really don't know if that is the right choice for him right now.  I don't even know if it will be on the table.
The more I have thought about it, I don't know if feeding therapy can help, right now with his muscles being weak it is neurological not physical, when he back I can feel his stomach muscles, they are so strong but he can't use them.  He is so floppy, always falling over and can barely hold himself up.  Today we were walking in the wind and it literally knocked him down.  I don't think the issue is one that can be fixed with making the muscle stronger, I think the goal will be not to loose the muscle while we wait for this to pass, how ever long it takes.

Thursday, August 2, 2012

Today was hard.

When Matt is having testing I am usually prepared for the results.  Before today there has only been one time that I have been caught off guard about Matt.  It was the day I went to see Matt's neurologist and he told me he thought Matt had a metabolic disorder.  I cried that day a lot, before that day the thought that Matt could have a life shortening illness had never crossed my mind.

Today was not as sad as that day and I didn't cry, but I wasn't prepared.

Matt started having swallowing issues about 2 months ago.  This month things started to balance out.  Matt's drinking went back to normal for the most part, he even stated having leaky diapers again.  We already had the swallow study scheduled so I thought I might as well go through with it.  We are also wanting to start an oral motor program for Matt's tongue thrust and we need to know if Matt's tongue thrust was affecting his eating.

Going into the test I thought we might find a clue to some of his eating issues, but I thought the swallowing issue had been resolved so I wasn't expecting news on that.  The swallow study showed Matt isn't have a problem with solids or pudding.  She can't guarantee he is not having tongue thrust issues while eating, but she is guessing it isn't a problem.  Liquids on the other hand are a problem.  Thin liquids (pediasure) are penetrating the barrier that covers the area that protects the airways.  She said that in all liquids I need to add simplythick nectar.  Nectar is the term used for thickness.  There is nectar, honey, and pudding.

I am not sure where this leaves us.  We see the GI doctor on Monday.  I went today and bought some simplythick for Matt to try.  I want to give it a real shot before we see the doctor.  So far it isn't going well.  The first four ounces of juice/water/simplythick he drank with out a problem.  When I gave him pediasure/simplythick he drank maybe an ounce or two.  Later when I gave him the juice/water/simplythick combo he drank 3 ounces.  Not the best results.  When giving his meds he did sneak in some regular water and he drank about 3-4 ounces.

I am sad about today, I hate to drink thick liquids, I won't do it.  I don't even drink 2% milk because it is too thick for me.  I would have a very hard time coping with this.  While I am mixing and giving this to Matt I am trying to act happy like there is no change or this is a good thing, but it is hard.  I don't know what this means for the future, near or far.