Quick infection and poo update

So Luke went through some more bad poos when we started the antibiotic for the infection at his pin sites.  I switched his diet back to dairy free and changed it up to what I call the "diarrhea go away" mix.  This mix is working as I have not had a bad poo in over 48 hours.  The c-diff has gone away with antibiotics and his poos have a more normal and not quite so toxic smell.  I am  considering going out in public again with him too.  This is great as when you have a boy with explosive poos going anywhere is not fun and involves lots of extra clothes, blankets to catch things, diapers, wipes, and hand sanitizing wipes to wipe everyone down when we are done.

As for the infections, today they finally looked okay to me and moving towards healing.  Luke is still in some pain just before we give meds and it is sad to see.  When he gets tired it gets worse and sometimes just before bed can be rough.  Today was really rough as he decided to change up his routine at bedtime and wanted Irish music instead of his Signing Time Sleepy music.  There was lots of frustration by all before I thought to ask if he wanted Irish music.  I have to say "Thank You" to the Holy Spirit for putting that one on my lips as I have no idea why I asked that just then.

We are still turning the pins.  His jaw is coming out nicely in the forward direction but is skewed to the right.  So we are turning more on the right than the left.  Saturday we plan to send in pictures to the docs again and hopefully they will give us the okay to stop turning.  Monday we go back down to see them and hopefully get the pins taken out.  I am hoping this trip will go better as it will be without c-diff poo.  When the pins come out Luke can go back to playing on the floor and moving about.  He is getting pretty bored sitting in his chair all day.  It is hard to let him sit and play on the ground because Hannah, who LOVES her big brother, likes to touch and pull and prod Luke.  Also, he still has times where he just lets his head fall or gets off balance and I am afraid that he will hit the pins on the ground and do some serious damage.  So he stays in his chair...till Monday.

Please pray
 for him to be in less pain and less agitated.
For us to be able to keep him occupied in his chair and him to be content with being in his chair.
For the last days of turning the pins to put his jaw in the right place
for the pins to come out on Monday
for a safe and uneventfull trip down to the doctor on Monday

Here are some recent pics.  I will post a series when we are all done turing.

Tubefeeding book

A book was just published by a tube feeder for Tubefeeders and their families.  It is a guide on all things tubefeeding.  Check it out here https://www.createspace.com/3811540.  I have followed the author on his blogs and in forums and he is all about sharing knowledge and making things easier for tubbies.

I am researching AAC programs (communication programs) for Apple and Android mobile devices.  Watch for a review blog coming soon.

Oh and here are some pictures of the cuties: no super new ones but cute ones.

I will eat anything!

6 month shot

Gotta love a good tractor.

Luke and his flip up book.

Making a tower.

"Wow mom look how high"

Reading with daddy.

Feeding Tube Awareness Week - Life with a feeding tube

Luke eats through a tube. He has never eaten orally and right now is not allowed to eat anything orally as we are not sure that his muscles and all the swallowing parts function. We do think he can swallow but as a three year old who has never practiced it would be dangerous to try as he could choke on his food or fluid could get all they way down into his lungs causing an infection and difficulty breathing. So we feed Luke through a tube. So what does that look like?

(click the pictures to see a bigger version)

Luke plays with toys while eating. We also encourage him to put an appropriate toy in his mouth to associate oral stimulation with eating.

This is a picture of the actual button that we feed him through.

We used to hold him and feed him. As babies are held to get nursed or bottle fed. We probably held him until he was 2 years old or so. Then we moved to the high chair. I have been trying to make his live as "normal" as possible within the limits of his medical issues. So he eats in a high chair. He usually doesn't eat when we do as it is hard to feed yourself and him at the same time, although it can be done. We are lucky that Luke doesn't have any digestive issues, he just isn't able to get food to his stomach so we help with that.

Luke is fed 5 meals a day. Right now I blend up his entire day's nutritional requirements and then divide it up in 5 equal parts. We have thought about making 3 bigger meals and 2 snacks but our lives our a little crazy and 5 equal meals is working right now. We feed Luke real food that you or I would eat (or maybe not, he eats beet and turnip greens, and is a very good disposal for nutritious veggies from our farm share that we don't really like or eat as much of). For more on his food go to these posts: Blenderized diets. I must say that the medical world of tube fed babies, children and adults in American seems to be centered on feeding tube fed people formula or some form of it. And yes some people have allergies or special requirements and they need this formula. But for the most part I really don't like that the medical professionals are so against feeding real food to tube fed kids. I have had my run ins with dietitians. I have found that it is easier for dietitians and others to calculate all their calories, fats, proteins, ect.. when they can just read it off a label and it is all neat and clean. I have had a conversation with a dietitian where I was asking a question about fluids and she basically told me that if I was using formula it would be she could give me an answer right away but she would have to have me submit to her Luke's blends of food so she could run them through her program. So I asked my pediatrician, which I should have in the first place, and he gave me an answer as he would for other kids. Luke is just another toddler. His food just arrives at his stomach a bit differently.

Okay so what does feeding with a feeding tube entail. Well you need to make sure you have enough supplies. If you don't have tubes that connect to the button that connects the outside world with his stomach then he can't eat. If you don't have a syringe to put on the tube, he can't eat. Also, you have to make sure the button that connects to his stomach is working and doesn't fall out. The hold the button is through is a constant open wound. Think about that, having a constant open wound. Before Luke was very mobile he had the best g-tube (even though it is a button that is what it is called) site the doctors had seen. Then he started crawling and standing and walking with his walker and it does not look good anymore. We are constantly watching it and it bleeds and oozes and there is a lot of extra skin growing. It can get infected so cleaning and constant care are a must.

One thing that is hard for us is that if you forget food, or are somewhere and aren't going to get back for dinner normally you would just pick up some food, either at a restaurant or grocery store. With Luke if you forget his food, you have to go back to get it, or get back to the house if you forgot it. We were on our way downstate and forgot it, thankfully my dad was able to go to our house, pick it up and then meet us halfway back home. We had left early thankfully so we were only a little late that day. There is a lot more planning ahead and awareness for meals for Luke.

Some pluses of eating with a tube...

you don't have to taste those icky nutritious things

you can eat while you sleep, although lately I am trying to not be feeding Luke when he sleeps

it's easy to eat a perfectly balanced diet

Kids are super curious which is good, I don't mind telling them about Luke and his tube and they usually think it is pretty interesting and sometimes cool. Parents get a little weird when their children stare or ask questions. To parents I would say if you see your child looking take that as a cue to ask questions yourself and you and your child will learn. I have heard other tubie parents say they have had some bad reactions from people. I haven't seen this and I am glad. It is a little odd and takes some explaining when someone wants to just give your child food (we are so protective and must look it because it has only happened once or twice to us) and you tell them they can't have it. You usually have to explain its not just you don't want them to have sweets it's that it is dangerous for them to have it.

Luke does get hungry, although not often, we feed him on a schedule and he really only complains and gets ansy when we are off the schedule by a lot. He knows his food and syringe and tube. He likes to watch the food move to go in.

Right now we expect Luke to eat one day. We are doing oral motor therapy to get his muscles working for when that day comes. We are also working on getting him tasting things off his finger and putting small amounts of food in the back of his mouth with a syringe to start training him to swallow it.

So there you have a little of life with Luke and his feeding tube. :)

More Luke Blenderized Diet

So here is some more detailed info about Luke's blenderized diet (BD), maybe too much info but read however much you want. 

Right now Luke is growing too much so we are cutting back in calories.  I have heard of a lot of things that you can add to a BD to get your calories though from others so if you are worried about calories a BD can accomidate that or just about anything.  Luke gets 220ml 5 times per day and does great with it.  Sometimes we plunge and sometimes we just let gravity work depending on the thickness of the food that day.

I started based on a diet of "Super Baby Foods" by Ruth Yaron who is great at making food efficiently and has good charts about how to get all your nutrition.  Another resources was the Blenderized Diet Handbook but truthfully I found that a baby food book worked better becuase I wanted to feed Luke like I would a normal child.  He just gets everything for the day all together. 

We started food with Luke at a year with just getting a tablespoon of something in his feeding once per day and then we upped it to all feedings getting food.  When he was good with a variety of foods we started adding more food in each feeding and then got to a total blenderized diet.  I sort of worked it like I would start feeding a normal baby just his was through the tube instead of by mouth.  This helps a lot with the taste issue since I don't have to worry about it.  I will have to rethink my food choices and blends when the next baby starts eating.  In the summers we pay to get a share of farm veggies and fruits for 18 weeks and since Luke doesn't taste he gets those really good for you veggies that are not so good tasting to us.  We also can and freeze when produce is in season so I don't have to buy veggies off season.  I cook my veggies and give them a quick blend, put them in a covered ice cube tray and freeze them.  I then vacuum seal them in 2 week portions.  So far so good for this winter.

Our basic recipe for 5-6 feedings worth:
(we are really organic locally grown nuts so most of this is just that)
550ml of milk (we use skim now to cut calories but did use whole)
50 ml of real 100% juice of some kind
1 Tablespoon of wheat germ
1/4 ish of ground chicken or turkey
1/2 hard boiled egg about every other day
2-3 heaping Tablespoons of whole milk yogurt
1 cup of porridge (we use a 1:2:1 mix of a protein lentil or bean: oatmeal or grain: flax seeds, blend all dry (don't worry about soaking lentils or beans) and heat in water for 10 min, recipie from "Super Baby Foods".)
3-6 oz of fruit pears, bananas, oranges, tomatoes
3-6 oz of veggies lot of kale, spinach, carrots, squash, broccoli
for the fruits and veggies I try to make a rainbow and get some Vit A and Vit C veggies as well as hard greens in every day.

After blending I use a digital kitchen scale to divide out my feedings.  We feed 220ml but I usually measure 240g to account for what clings to the side.  We don't flush with water although I am contemplating flushing more lately.

I also add a drop of Vit D (400) to one feeding a day, probiotics to 1 feeding a day and a multivitamin to 1 feeding a day.

So too much info maybe, not enough, feel free to contact me.

Luke's g-tube and feeding history Part 3 with a little bit of bloating and refulx

So in December some time Luke had a couple of things start to happen that we still don't really have explanations for but they are not happening anymore and didn't happen with that much frequency even when they were happening.

First, he would wake up at night high pressuring his vent by bronchial spams (his airways opening and closing or spasming).  When his vent high pressures it is because the vent is using more pressure that we would like to put air into Luke's lungs.  This usually happens when he is out of sync with the vent or crying, or purposely trying to get our attention by pushing air back against the vent.  Luke would not really be awake during the time.  His eyes may open but he was really really trying to be asleep and he was also arching his back and seemed to be very uncomfortable.  Holding him may help for a minute or two but that was all.  This first episode lasted hours.  It was not fun to watch as a mom who could do nothing.  The next night was fine though and I was hoping this was just a fluke.

A few days after this we also noticed that Luke's button got really tight and pretty quickly, it seemed like in the space of a couple of hours and the nurse didn't notice when she was feeding him in the morning but I noticed 3 hours later.  I just watched it but noticed that there was bright yellow bile coming up from his g-tube when we burped him before the feeding.  By that night there was some dark coffee grounds looks stuff coming out from around the stoma and sometimes in the feeding tube.  This was not too good but I didn't know what to do and at that point was hoping it would go away soon and I had just eaten something weird that had come through the breast milk to Luke.  Well the next day Luke was uncomfortable and lethargic.  By the time Kevin got home I was worried but we thought we would watch him for a bit more.  By this point lots of coffee grounds were coming from around the tube.  He was looking so uncomfortable and maybe it pain, it is hard to tell with a Moebius child who has no facial expression we decided to take him in.  His button was super tight and he seemed very bloated.  We called the surgeons who put the button in who agreed with taking him to the ER.  When we got there the ER doc ordered an x-ray to look at where things were and saw that there was some pocket of something by the tube.  He called the pediatric surgeons from DeVoss and over the phone they thought that the coffee grounds was dried blood and this would irritate the stomach and was likely what was bloating it and it is hard for Luke to get rid of excess air because he has a Nissen Fundoplication which pinches the top of his stomach so things can't go back up and possibly aspirate into his lungs.  They instructed us, Kevin and I, through the ER doc to take the button out and let things drain and then put the button back in.  I like to do as much as I can myself, some people don't want to be the bad guy but I would rather have someone who knows Luke and is comfortable with him and him with them to do stuff too him.  Also a lot of docs don't seem very comfortable with Luke because he is on a vent and they assume very fragile.  Also I am pretty go to and in your face.  So the ER doc was very happy to let us do it.  He was finally sleeping at this point which we liked because he wouldn't be so wiggly.  Well when we pulled that button out there was a mini volcano of coffee grounds and bile.  Luke's stomach immediately went back to a normal size and Luke woke up and started making noise and was his normal happy, playing self.  It was like we just turned a switch.  I was ecstatic that it was that easy and wished I could have done it from home.  The docs gave us a prescription for Zantac to help calm his stomach and sent us home with Malox, I think, until we could get the Zantac the next day.

I remember talking to maybe the pediatrician and I am not sure what other specialist about the night time episodes and the tummy bloating and not really getting any answers.   The next time we were at the pulmonologist (which may have been a month or two later) I ran the night episodes, as they were still happening, by the doc and she immediately said she thought it was reflux.  They thought that the food was coming up just enough to trigger the Vagus nerve which signaled reflux and protected the airways from aspiration by having bronchial spasms.  Even with the Nissen Fundoplication they thought that reflux just a little bit up could trigger the nerve.  I have also read a lot about Nissen Fundoplication that fail.  The episodes sometimes had a lot of suctioning and sometimes not.  The suctioning seemed to go more with the face that the spasms where creating the mucus than any food getting up there so I didn't think the Nissen Fundoplication had failed.  I also started making sure he was fed sitting up or at least with his trunk up and leaving him inclined for at least 20 minutes after each feeding.  We used towels to incline his crib since the nurses fed him in there twice a day. 

These reflux episodes can be minor to severe, I think all in all there were only 2-3 really sever episodes and maybe less than 10 minor ones.  However they usually lasted for an hour or more.  It was awful to watch and not be able to do anything.  Luke couldn't stop the spasms and they would wake him up and then the uncomfortableness of  reflux just sent him to a place where no person could sleep.

We continued to take Zantac and got an appointment to see the GI docs.  I was talking to the pediatrician about the reflux episodes, they weren't stopping and he offered to prescribe Prevacid.  I was wary and didn't want to because I had heard some. bad things about it from other blenderized diet parents.  However, when we saw the GI doc (which was in May and this all started around December) she could not say exactly what it was especially because the episodes were so few and far between.  She said reflux is difficult to concretely diagnose and she wondered if Luke just had a really sensitive stomach.  With all the big episodes, but I don't think so much of the small ones, I had been trying to find anything that could have triggered reflux or any of the reactions we were getting.   I had figured out that the big episodes were linked to him accidentally getting 30+ ml more in a feeding or being fed while laying flat.  The doc thought this supported the sensitive stomach but since we had recently had a bad episode she wanted to try Prevacid for a month and then no reflux meds and see how things went.  I agreed to the Prevacid after asking many questions and being assured that getting off it would be very easy if he did not have reflux but still not too hard with reflux (I had heard stories that once you started Prevacid it would be hard to wean a child off it).  Prevacid basically stops the acid production in your stomach which is a pretty major thing to do.  But for a month I would try it.  After a month we got off all medicine and we have not had any reflux or should I say "reflux" episodes in many months.  We will see the GI doctors in a month and hopefully that will be the last time.  I am hoping we were just blowing up out of proportion a normal baby digestive system getting used to the world thing. 

I was also trying to see if the stomach bloating/tight button episodes were correlated with the reflux episodes (I am a trained research scientist).  And for the reflux episodes I never wanted to test Luke by giving him way to much food or laying him flat to feed and seeing what happened because I didn't want to cause him hours of no sleep and pain at night.  It ended up that it didn't always happen after reflux episodes at night but also a couple days before a bad reflux episode so we determined that they were not directly tied together.

The bloating episodes were still going on through all of this.  Mainly in January and February I would say.  We pulled the button out and drained things once with good success.  We never got as much out but then we never let it get as far as the first time.  One time we pulled the g-tube out to drain in and then put it back in and two hours later he was bloated again.  After a couple of times in and out where it didn't make a difference we stopped taking it out when he was bloated, thinking we would only do it as a last resort.  We also worried that by taking it in and out often he would lose enzymes and nutrients he needed in his stomach.  The bloating episodes could come on in an hour or so and go away during a feeding or another time just as fast.  Sometimes they would be all day and sometimes just a few hours.  They were usually accompanied by bright yellow bile coming out of the g-tube when we were decompressing before feeding.  We never got answers to why this was happening.  Their best guess was that the button was irritating the inside of the stomach causing things to bleed and the blood was irritating the stomach which cause bloating. 

We are not on medicine for any of these issues and we haven't had a bloating or reflux night episode in months.  We thank God for this and continue on.  During this, in the middle of January I started introducing real food through Luke's g-tube.  By late February I stepped up the food big time and he has been doing great with the food.  I stopped pumping in June and ran out of breast milk in August and Luke has had no problem on all cow's milk.  I will do a separate post about Luke's blenderized diet even though this was going to be a feeding post, I realized it is a post all unto itself.

Luke's g-tube and feeding history Part 2

So in September (Luke is now 7 months old) the valve on Luke's Bard button broke and anytime you opened the button stomach contents came spilling out.  This was not good as he was losing stomach acid and valuable enzymes.  We tried to work with it and be really quick about putting the feeding tube in and taking it out and closing it when we were done but it was not going well.  We took a fast trip down to the surgeon and got it replaced with a Mic-key button which we would be able to change out ourselves, which proved to be very beneficial in a couple of months.  The Mic-key button sticks out more from Luke but not enough to make any difference it seemed to Luke's daily lives.  Now getting the correct extensions to go from the button to the feeding syringe for the Mic-key button was very difficult.   In the hospital it seemed that almost every time we ordered new extension tubes they sent up ones for a Mic-key button and not the Bard button.  So I was thinking that extension tubes would be easy to get for the Mic-key button.

However, getting the correct connections and lengths were the tough part.  They come with strait or 90 degree ends at the button and the other end can come with and without a medicine port.  They also come in two different diameter tubes.  We used the 90 degree thin tube when we were putting just breastmilk through it but when I started putting my real food blenderized diets we needed the strait end to help it move through and the strait end (bolus) tube is a larger diameter.  All the reference numbers for these tubes are really close together and I had to do a lot of trial and error with my durable medical equipment (DME) company.  The people ordering at the DME may have no idea what your equipment really looks like so you need to give as much description as possible and if you can find a reference number somewhere that helps.  However, be ready for trial and error.

We started with the medicine port top it didn't stay on the bottom of the syringe very well and we had LOTS of messes.  Also the medicine port would just come open.  When I started ordering the strait bottom larger tubes I realized that we could get the non medicine port top which fits very snugly on the syringe.   I would recommend the tip without the medicine port to everyone.  We usually put medicine strait into his g-button with syringes that fit directly into the button.  These syringes are hard to fine but you can ask for them at your pharmacy or your DME.  We ended up with some for awhile that had a twist tip that we just cut off with a box cutter and then washed the syringes before use.

So we were smooth sailing g-tube wise for a couple of months (breathing and health wise is a different story and got crazy in here but that will be a different post).

Real food for real people

Real food for real people... I have chosen to feed my son, who eats by g-tube, real food blended up.  I have heard many stories of speical needs kids greatly improving when moving from formula to real food diets.  Luke hasn't know any different and is doing just great.  Its not really that hard.  The hardest part is getting the nutritionist you are working with to get on board with you.  Here are some resources I have found helpful.

Blenderized Diet group on Yahoo Groups
Super Baby Foods by Ruth Yaron (Yes this is for babies who eat by mouth and are "normal" but has great nutritional info, recipes, how to blend, store, use fruits and veggies, and how to do it all in a small amount of time.)
Homemade Blenderized Diet Handbook
http://youstartwithatube.blogspot.com - a blog I recently found that I haven't even gotten to all the info yet)
Me - I love to talk about it so feel free to contact me.

An interesting note is that while at the Moebius Syndrome Conference a nurse that used to be in Australia said it was the norm to give blenderized food to g-tube fed people in the hospital.  Awesome for Australians.