G Tube

So we are going ahead with getting Carter's G Tube, we will hopefully be doing it this month.  We saw the GI doctor today to see if he was a good candidate.  He has not gained any weight in 4-5 months; he was in the 50th percent for height, but is now at 25%.  He was about 25 percent for weight, but is not 10%.  He has obviously declined, because he isn't getting enough calories or fluids.  This was in a way relieving to me, to know that we are on the right path.  He is no longer eating any food except some pudding.  He is just drinking bottles for his 3 meals, but even that he isn't getting enough.  He should drink around 30 ounces a day, and he does about 17-22.  Because he is so sedentary and doesn't move much, it has kept him hydrated well enough to this point.

On Monday we are going in to have a barium study done on his insides, to see how big everything is and how it's lined up.  This needs to be done before the procedure, because we are choosing to do a PEG.  This is a shorter procedure, where Carter would be sedated, then they would pass the endoscope through the mouth and into the stomach.  The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source, like a flash light.

How it's done:  A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.

He would just be admitted for one night, and recovery would be quite quick.  After around 6 weeks, they would place a button on it for less visibility and easier management.  So the first while he would have a tube coming out, that we would tape to keep it away.  We will update you once the surgery comes and let you know how it goes/went.  Thanks for all those who have supported us, left beautiful comments here or on Facebook, or even those that just read because they care.

G Tube

So we have quite a big decision on our hands...whether or not to put a G Tube in Carter's stomach.  If you don't know what that is, google it.  I used to work in the GI department at Primary's, so I was already somewhat familiar with this.  Following Carter's swallow study, we were told that we should consider a G Tube, for several reasons.  He is aspirating and coughing his food a lot, and this could be dangerous if it goes into his lungs.  For this reason, Carter even is more hesitant to eat.  It's like his sensory system is telling him something is wrong.

We have to thicken his foods and drinks, so it is taking him longer to eat and drink his meals.  He no longer likes applesauce or yogurt, so he is regressing.  He is not taking in enough liquids, which worries me.  The dietitian said for his age, he should be getting around 30 ounces, and that is besides food.  He is getting maybe 10 on a good day.  We met with the Ketogenic doctors today, and they also suggested the G Tube.  We have been hesitant about this decision, but the more I see him struggling to eat, I think we may need to do this.  He needs to get the calories and fluids to be the best he can be, and to move forward developmentally.

We want to meet with the GI doc, and then move forward with this.  I'm sure it will be a big change, but I won't have to worry anymore about if he is eating or drinking enough.  Plus, it will make the Ketogenic diet much easier.  They make a specialized formula that you just put in, and there you go!  I want people to realize that this doesn't mean we are lazy, or that we have given up.  There are reasons this is a good idea...1)  safety, so he doesn't aspirate his food or liquids, 2)  we can make sure he is getting everything he needs, 3) the Ketogenic diet will work so easily with this.  I feel good about this, but with the summer being so busy we may have to wait a month or two.  We also have a vacation coming up in August.  I hope I can feed him well enough until then.

The G Tube is not permanent, it can be reversed.  Although he would probably have it in for at least a few years, or until he can pass a swallow study and we know he is getting stronger and can eat.

It would require surgery to put it in, and it is covered with a button.  He can still take baths, swim, etc.  I foresee this making Church a difficulty because of the time it is, and going on dates for a while, as we learn how to do this.  I want to make sure we learn all about it before we do it, but I also want to make sure he is safe. 

To be honest, at this point, I am pretty frustrated with feeding him.  It is taking twice as long as usual, if not more, and he isn't taking in even half what he used to.  A lot of times he even rejects his anti seizure medicine, which he has to take.  It really worries me.  Since I am his mother I am really his advocate, his voice.  I need to give him every advantage, and to make things easier for him so he can progress and live a full, happy life.  I am actually excited for this G Tube, I really think it will help everything.  And if the Ketogenic diet works, even better!  Then we can control his seizures, and help him move forward. 

Swallow Study

We had a swallow study done on Carter, and they gave him a few different kinds of textures with barium to see how he swallows.  With all of the consistencies, it showed that he aspirates a little.  A lot of food and liquid is just sitting in his throat, and not really moving.  He has delayed swallowing as well, and they call this dyshpaghia.

We can't feed him any thin fluids because he most definitely will aspirate.  This means fluids or food can go into his lungs.  So we have to use this stuff called Thick It to help make his bottles thicker for him to drink.  This means it will take longer and more work on his part; it has the consistency of a milkshake.  I also have to puree his foods to make it easier for him to eat.  Positioning is key, to make sure he doesn't aspirate, so no being on his back or anything like that.  I feel bad that I didnt' know this was going on- what clued me in is his recent coughing when eating.

His feeding therapist wants to work with him a little longer, and see if he gets stronger, then do another barium swallow study.  If he hasn't improved, we may consider looking at a G Tube.  This would not replace his eating, but would be an option if he isn't eating well.  The key is SAFETY- I don't want him to get pneumonia or get damaged lungs.  It doesn't mean giving up if we do it, it means that we want his safety and for him to get all the foods and calories he needs.

What's Next:
We start a Music Therapy class, and it should be a weekly thing if we enjoy it.  We will also follow up with Gastroenterology to discuss the possibilities of a G Tube.  (I have mentioned the Ketogenic diet before, and a G Tube would actually make this process easier).  We will also continue to follow up with our rehabilitation nurse & doctor, Neurology and his feeding specialist...along with his other therapies.  We are having him fitted for a new stander that will be his own (yay!) and then some orthopedic braces for his ankles.  He needs some extra support when standing, since they are so weak and floppy.  Whew!  Busy times.  I hope I can keep up.  Stay posted for more details on his upcoming activities.

Things Coming Up for Carter

So this week has been a busy one so far with doctor appointments.  He had a second eye appointment on Monday, and everything looks good.  Yay!  I was worried he would need glasses.  Had another great appointment today, and we got a lot done and stuff coming up.

Swallow study- Carter is having one done this week to see how he swallows.  I'm not sure how exactly it works, but it sounds interesting.  His feeding specialist wanted to test it as well, because a lot of these kids have dysphagia (trouble swallowing) and hypotonia (low muscle tone).  He has preferred bottles over food for the last while, which has been a little frustrating.  Partly because he has to eat at least some food to get his medicine, and because he takes so long drinking a bottle.  Maybe we'll figure something out with this study.

Sleep study-  We want to have him observed overnight to see how he sleeps.  Since he wakes up a bit and seems restless, we want to see if there is something he needs.  His nurse mentioned that perhaps he just needs a little bit of oxygen at night, or maybe a weighted blanket or tighter shirt.  I'm interested to see what we find out.  Sometimes when I go in to check on him, I can hear him holding his breath for a few seconds.  We are trying to coordinate this study while he is inpatient there for the Ketogenic diet evaluation.

Ketogenic diet-  We meet with the doctor later this month to discuss if this could work for Carter.  It is a diet high in fat, regular protein and low in carbs.  I'm nervous at this point how it could help, since he isn't eating well.  Guess we will see.  I figure it's worth a shot if it can stop his seizures.

Here is just a cute picture of Carter- we cut his hair every few months because it gets so long.

Meeting New Friends & Nursery

So I had the privilege of meeting some new friends that have a child with 1p36.  It was so nice to be able to talk to someone that can really understand what I am going through.  Although our children are different ages, they have been there and done that.  I know every child's experience will be different, but it was still nice to talk to them.  It has been a process since Carter's diagnosis of finding people that live nearby.  Although the reports say that 1 in every 5-10,000 have this syndrome, I believe a lot are undiagnosed.  We are so lucky to have a family close by that we can get to know.  There are a couple of groups online that have helped me get in contact with other families.  Some are monitored and exclusive at who they let join, so it is private.  I like that. 

So, I think we have decided to let Carter go to Nursery.  He is 19 months old tomorrow, and we do need the break at church.  They said they will train just 1 person to take care of him, so I'm excited.  Plus, I'll be down the hall if anyone needs me.  I don't know how aware he is of people or things, but he will probably enjoy the music at least.  I will keep you all posted how he does.

Bear Lake/ Melatonin

This past weekend my husband's extended family on his mother's side had a big family reunion up at Bear Lake.  We drove up Friday afternoon and got there about 8pm that night- we had traffic and had to stop a few times for Carter.  He was great in the car until the very end when I tried to feed him.  I think he was so tired he just didn't want to eat.  That always frustrates me to no end, because his seizure medicine is in his food, and he has to eat it.  Sometimes we have to force him, which is really sad.  Anyways, so by the time we got to the big cabin, Shelton Lodge, I was pretty rattled from Carter's crying and getting food everywhere.  Plus it was his bedtime, so we hurried inside, set up his pack 'n play, and laid him down.  Well, that night, I don't think either of us got much sleep.  We aren't used to sleeping in the same room as him, so we could hear every little noise.  I could hear him rolling around in his pack 'n play, coughing, and then yes- crying a few times.  This has been quite normal for the past while, so we brought him into our bed to hopefully quiet him down.  I guess he kept kicking Chris all night, poor guy.  I have been dealing with his waking up for several weeks now, so I was pretty exhausted already.

By morning we were so exhausted, so we decided it would be best to go home that evening.  I know I know, wimps right?  I was too tired and stressed to handle it 2 more nights, especially with a lot of family around that I'm not super familiar with.  That day was fun, we went on the beach, well, what beach there was.  Then we went on a boat ride in the freezing cold water.  Is Bear Lake always this cold?  We enjoyed Bear Lake's delicious raspberry shakes, and then my husband and I decided to leave Carter back to enjoy some alone time.  We rented a 2 person surrey, picture below, and biked for an hour on the trails.  It was so fun, and a nice way to spend time together in nature.  We enjoyed our shake while biking.

We left that evening, despite many protests, at around 9 pm.  Carter took a while, but finally fell asleep in the car.  My poor husband drove the whole 2 1/2 hours home in the dark.  I did feel torn about leaving, but having a baby that isn't sleeping well, and is disabled, is really taxing on me and my emotions.  Sometimes I can deal with it well, and other times not as much.  This was one of those times.  We had such a great time at Bear Lake, but it was time for us to go.  Carter ended up crying for hours on Sunday from teething I think, so it was probably good we came home.  I can always deal with things more easily from my own home and environment.  What do you other Moms do when your disabled child is acting up, or is hard?  Do you still go out, or travel?  I had a comment from someone I will leave anonymous- I was told that I need to accept that this is my life, my child is disabled, and I can't just always leave events or things because we will miss out on it. (not word for word, but it made me feel bad).  I understand that this is my life, but I need to feel comfortable if I want to stay, or if I ask people for help.  Maybe I'm prideful I don't know, but I always think I can take care of Carter best, so I don't share him much.  I've mentioned in a previous post that we go on dates a lot, so I do share him then, but at big family events, I keep him close to me.  I think that's pretty normal, especially considering the circumstances.

Okay, now onto the EVIL Melatonin.  Yes, EVIL.  I have been giving Carter just 1mg of Melatonin before bedtime to help him sleep, because I could hear him wake up sometimes and he seemed restless.  Well, guess what, it made it even worse!  For the past month I would say, he has been waking up at least twice a night, crying loud and for a long time.  He won't self soothe, so I tried to feed him, hold him, and even give him teething Orajel.  He would wake up again, and again, and again.  This was so unlike him, and so frustrating.  I just started to accept it was part of a new phase or something.  Well, then an angel on Facebook wrote me and said it can cause vivid dreams, and make them wake up crying a lot.  What?!  Blasted side effects.  So I stopped giving it to him and wah la....2 nights later....he didn't wake up at all!!!!  I don't know if this will stick, but it was a blissful night.