One month after tube wean

It is hard to believe that a whole month has already gone by since we finished the tube weaning program.  I was so worried that things wouldn't go well once Heidi left, but Sam and James are awesome and within just a couple of weeks they did not need to be tube fed at all!  We went out of town to visit family for a weekend in the beginning of April and I wasn't sure how things would go, being away from home and out of our normal routine and all.  I packed all their tube feeding supplies because up until that time they had at least needed a few ounces of formula by tube everyday.  I was prepared to give them all of their feedings by tube for the weekend, just in case.  

But it turned out that they did even better being away from home and they did not need to be tube fed at all that weekend and for the next three weeks!  Maybe it was the change of scenery, being around their cousins, getting some extra encouragement,  or just that they were ready.  Whatever it was, it was very exciting and a huge turning point for both of them.  

We have only had to give them a few ounces of formula by tube once since then,  just a couple days ago.  They weren't drinking as much and I have been worried about their weight,  James' weight has been stable but Sam is still losing a little bit.  I had been adding a little bit of cream to their drinks for about a week and it was fine at first but started to upset their stomachs and so they just didn't drink as much for a couple days.  I stopped adding the cream though, and they are both picking back up on their volume intake.  

They are still on liquid,  Pediasure and Carnation instant breakfast, but they are starting to seem interested in more foods.  They like yogurt, just a few bites at a time though, and we have been trying some different smoothie flavors.  They also like to taste pickles, chips, and other salty things but just lick them, no chewing yet.  I thought they would be sick of chocolate milk by now, but they still love it and ask for it all the time.  Sam and James have made, and are continuing to make, some amazing progress and we are so happy with how great they are doing!

One week after tube wean program

Sam and James are doing so great!  They have made a lot of progress in just one week, it is so amazing!  At the beginning of this week, James drank 20 ounces in one day. The next day he drank 24 ounces!  He is really catching on to recognizing hunger and knowing what he needs to do about it. Yesterday he drank less, about 14 ounces, but that is still good.  At this point, they are developing self-regulation and figuring out how much they need in order to make them feel good.  It is normal for them to drink a lot one day, and then not so much the next day during this period.

Sam has been drinking about 10-12 ounces a day, which is also really good.  I have been giving him a couple ounces of pedialyte after drinking to keep him hydrated and make him feel good about his hard work.  He has been a pretty happy boy and the amount of tantrums he throws has significantly decreased, which makes my job a whole lot easier.  I have been talking to Heidi everyday and she says that we can start cutting out the pedialyte to see if that will help Sam feel like he needs to drink more.  The only time he will be tube fed for now is before bedtime, if we feel like he needs it.

They are both so close to not needing their tubes at all!  They still just drink chocolate Carnation instant breakfast, but I am working on getting them to try some new flavors. They tried vanilla today and didn't mind it for a minute but then they wanted chocolate again.  That is fine for now though, we will keep working on flavors and start adding in puréed foods later when they are ready.  I am so happy that we went through the tube weaning program. It was not easy, but it is making life easier for us and giving the boys more freedom, not having to be hooked up to feeding pumps for hours everyday.  I will continue to post updates on their progress.

Day 10

Heidi left around 11:30 this morning, and the boys were sad to see her go but they will probably be even more sad when she doesn't come back this afternoon.  It was hard to see her go, it will be good to get things back to normal though.  Sam and James both did really well with drinking this morning. Sam drank about 4 ounces and James about 2 ounces.  They have been drinking more and more every day, and that makes me so happy and excited that pretty soon they will not need their feeding tubes at all!  For the next couple of days we will tube feed them three times a day and then decrease that as they are taking more by mouth.

I'm so proud of them, this was not an easy thing for them to go through but they did so well and I am always impressed with how strong they are.  We are so grateful for those who have supported us through this, especially those who donated to help make this possible for our sweet boys.  I will post another update on their progress in about a week.  

Day 9

Today was a really good day, Sam and James both made some great progress.  We fed them more by tube today, enough to give them more energy but still feel hungry.  Sam drank maybe an ounce this morning, and James didn't want anything.  I gave them almost a full tube feeding at lunchtime to give them some more energy, then this afternoon after their nap time Sam asked for a drink.  He drank a couple ounces, and James decided he wanted some as well.  James didn't drink a lot, but he seemed to be trusting the cup more than he has in the past few days.

I gave James another tube feeding around 3:30, but didn't give any to Sam because he had been drinking more.  I expected Sam to ask me to give him some in his tube when he saw me tube feeding James, but he actually climbed up in his chair at the table and asked for chocolate milk instead!  I was so proud of him!  Then around 5pm Sam asked for his drink again, and this time he drank about 3 ounces.  That is the most he has ever taken at one time!  When James saw Sam drinking, he also wanted some and he drank a couple ounces too!

At dinner time, Sam threw a tantrum and didn't want to sit at the table with us, but that is pretty normal for him.  James did sit with us though, and sipped on his chocolate milk the whole time.  He was so cautious about drinking yesterday and the day before and Heidi thought for sure he would take at least a few more days to get over that and want to try again, but he is James and he never ceases to surprise everyone by how tough he is.  I am so proud of both James and Sam for all they did today.

Heidi is leaving tomorrow so she made a follow up plan/ schedule for me to follow for now.  Once the boys start taking more by mouth, we can decrease their tube feedings even more until they no longer need their tubes at all.  It shouldn't take too long to get to that point as long as they keep up what they are doing.  We are going to miss her, especially the boys.  Everytime she shows up Sam says, "Heidi home, yay!"  So I think they will be sad for awhile when they realize she's not coming back.   We are so grateful for what she is doing for our boys and our family.

Day 8

I can't believe we are already on day 8, this has gone by so fast!  I have been feeling a little discouraged, but today was better and even though we only have two more days with Heidi here, I am feeling a lot more hopeful that the boys will be able to get off of their feeding tubes soon.  We gave them a little more formula through their tubes today because they were having such low energy and not feeling well enough to do anything. James was hanging his head all morning and looked so sad.  Then around 11am he brought one of his feeding bags  ( that connect to his feeding pump) to me, and said "lunch" in the saddest little voice.  It broke my heart, it is so hard not being able to feed them when I know that will make them feel better.  I did give some through his tube after that, and Heidi and I decided that they need more energy in order for them to succeed.

They both drank a few ounces of chocolate milk throughout the day, and we are starting them on a routine of sitting at the table and having a drink and snack every few hours.  They have always been happy with being on a schedule and knowing what to expect, so I think this will help them out a lot.  Heidi will be leaving on Wednesday and I am a little nervous about doing this all on my own when she's gone.  But being on a good schedule will help, and I will be able to call Heidi whenever I need to.  She thinks that within a couple weeks to a month both Sam and James will be drinking enough to not need their tubes anymore.

I wish I could say they will be completely done with the feeding tubes by the end of day 10, but I am really happy with the progress they have made.  The main goals of this ten days are that they start to recognize hunger and that eating/drinking makes them feel better, and to have more confidence and less fear about putting things in their mouths.  They have definitely accomplished those goals and that is so amazing!   I know they will do even more amazing things in these next few weeks!

Day 7

Today was much better than the past few days have been.  We only tube fed the boys one time yesterday in order to really push them and make them feel hungrier today. This morning Heidi brought them a couple of new sippy cups to try.  James was able to control the flow easier with his new cup, and that seemed to give him a little more confidence.  He drank a couple ounces of chocolate milk this morning and then tried some strawberry milk later on.

Sam also did really well today, he drank a couple ounces which is the most he has taken so far.  We got rid of the fruit punch and he was upset at first but got over that quickly.  He tried some strawberry milk and he decided he liked that, so that became his new "red juice".  I was very impressed with Sam today, he did not throw too many tantrums and when he did, he was able to calm down a lot faster than before.

I am really proud of both of them for trying so hard and for being so good today. Heidi is still confident that they can be done with their feeding tubes, if not by the time she leaves, by the end of this week.  Once they are drinking enough to sustain themselves and gain more confidence in their abilities, they should start eating more puréed foods like yogurt and smoothies and then onto solid foods when they are ready.

Day 6

Today was a little frustrating, I feel like the boys didn't make a whole lot of progress and there were a lot of temper tantrums, mostly from Sam.  We are working on establishing rules with food and our roles as parents vs their roles as kids.  It sounds simple, but we have never had to deal with those things before because we have never had normal meals together as a family so that makes it more complicated.  The boys are doing a lot better at sitting at the table and playing with/ tasting food while we have dinner. Most kids are told not to play with food, but in this situation it is actually a good thing and helps them to build trust with food.  They are also getting so much better at not throwing food.  A week ago if we would've given them food to play with it would have ended up on the floor within seconds, so that is a big improvement for them.

Neither of them drank very much today, and I feel like James wants to do it but he took some drinks that were too big yesterday so now he is a little afraid to try again.  We may have to try a new cup tomorrow that will be easier for him to control how much comes out.  All Sam wants is "red juice", which is fruit punch.  I guess it's better than nothing, but after just a few sips he is bouncing off the walls and going crazy from a sugar high.  And if he is going to be drinking something it needs to have some nutritional value instead of just being pure sugar.  So tomorrow the red juice is going to be all gone and I know he will throw a fit about it, but he will get over it and hopefully just forget all about the red juice.

This is such a learning process not only for Sam and James, but for me as well.  I have learned a lot about my relationship with them and how to be more patient and understanding.  I have been trying to put myself in their place and imagine how hard this must be for them.  We are still hopeful that they will be taking enough by mouth by the end of day 10 that they won't need to use their GTubes anymore.  I was really wanting a miracle that they would be eating cheeseburgers and fries by the end of this, but it is just going to take a little more time for that.  60% of kids who go through this program don't need their tubes after the ten days. The other 40% take longer, but they do succeed and that is what is important.  They will learn to eat on their own time, and we will have great support from Heidi and other therapists during our follow up period.  We still have a few days with Heidi here though, and a lot can happen in a few days.