So I want to start this today with the positive points that have occured since we transferred to Kluge. His strength and his mood are slowly improving.

Now to what is happening that has me in tears and leaves me with frustration:

When Lennon was transferred, he was on KidsEssentials and began to eat, slowly but eating nonetheless. It may have not been about nutrition, but really allowing him to establish a relationship with food. Then he was getting too many Calories through that and his formula was changed to Jevity 1cal, every four hours and he started to eat less and less each day.

Now my thought is that if we want to encourage him to eat then we need to schedule the feed differently. I know he was only getting about 45ml, but for a child who has never had a good relationship with food, nor has ever eaten a what is considered to be a healthy diet, has been conditioned to not eat certain foods (alas high protein) this was a lot.

Prior to transplant, we struggled to get him to eat, keep up with his calorie intake, minimize the protein intake which did not give him many options, well options he did not want. He was a french fry- potato chip kind if kid, and we managed to find soups that he liked and be creative with them.

Now they expect him to increase his food intake. Which with a person that has a negative relationship with food, and was trained not to eat most of what is considered to be healthy, this is not going to happen overnight. At least this is my point of view.

For the last few days, I felt that we have not been heard. Certainly, I don’t want them to stop the feeds because he needs the calories and the protein, I get that. But if we want to encourage him to eat then we need to schedule them after breakfast, after lunch, and after dinner, so that he is given the chance and opportunity to be hungry, and then to eat. So we were able to narrow down the schedule – 3 times a day.

What they want however is to give 240 calories (he needs about 1000 a day), with protein, but also give him 900 ml of fluids (water). This means he is getting 300 ml of food/fluid three times a day. My thought is that this is not going to encourage him to eat if anything he will never be hungry. Our objective is that we do not want to end up with a G-tube in his stomach.

For one, he can learn how to eat, but it won’t happen overnight; 2) infections happen very easily with a G-tube since there is a hole in his stomach, and dirt is going to get in, and messing with it by Lennon himself, and cleaning it, yadiyadi. Since he is on immune suppressents he may not be able to fight of these infections that are likely to occur.

So today, we are doing 100ml of KidsEssentials 3 times a day, and no more water into the NG tube. We established that he can drink water and gatorade and thus get his essential maintenance fluids, which 900 ml is 2/3 of what he is supposed to have. We did this because the last two nights in the evening he vomitted – a good indicator that what they were doing is too much.

I have been frustrated because again I felt like I was not heard. What part of he never had a good relationship with food didn’t or doesn’t get through to them?

But the speech pathologist that deals with feeding/eating issues will not work with him until he is stronger. There has been talk about sending him home with the NG tube, and if we would be ok with and willing to place an NG tube through his nose. WHAT? First off, I would not want to do that, this appears almost cruel to me if I did it or anyone else who loves him and cares for him, I’d rather have a trained RN come to my house and do this.

Secondly, while at UVA and Kluge, every time they placed the NG tube, they took X-Rays, umm I don’t have an X-Ray machine at my house. Certainly I know you can listen to the stomach and ensure that it is in place, but still….see my problem?

Yesterday and today I have been on this emotional roller coaster because we were not being heard, and then when we were heard or so we thought, they still “changed” it up doing their own thing. This is family-centered care!

Also, I felt they were not giving things enough time to work them out. Like the feed schedule that he is on now, he will be on for 4 days, and then we revisited and reevaluate to see what has changed if anything has changed. We have also been asked to spoon-feeding him as he probably gets fatigued really quickly, when he has to do the spoon-feeding himself, and then chewing etc.

We do not have an opposition to that. But then other people are worried that we would force feed him. What? We had to feed him for the last 2 years to get him to eat, well on an off since he was born but more since his diagnosis of the UCD. When Lennon would say he is full, we would stop.
Which brings me to the point that Lennon does manipulate some of his environment. All kids do this, some more than others. But when he says, “I’m hungry, you need to turn the machine on”, well that indicates that he recognizes his hunger, but perhaps does not want to do the work?!

I really think he needs to be worked with, I know that his eating habit and his relationship with food has to occur gradually, but I wonder if they sometimes get it. Again I reinforce the point that he has never had a good relationship with food, and he has never eaten well.

I know that they are going by the developmental norm set by the standards into how much a 5-year-old should weigh and what they intake should be, and again I have to say…

Hi, this is Lennon, he does not follow the norm, he is not an average kid in which the standards and developmental norms apply to.

As a matter of fact, his brothers do not follow the norm – his oldest brother is 5’9 and does not weigh what he should, he never has, he always has been tall and skinny.

Lennon in the past has been considered to be overweight, umm part of the Urea Cycle Disorder is that development is not going to be what it should – alas he was short for his age but up on the weight. Go figure.

I sometimes think that they forget he has had a few major surgeries, has not taken much orally since November and that his stomach is not the size that it used to be and this too will take time and is a gradual process. Next week we will have another family-care meeting and set up some specific goals, which this may mean he will come home with an NG tube and we do feeds at home. I do not have an issue with that, I’ll just have to find the resource to help place the NG tube when it needs to be done, and no one should think that I won’t take him to the hospital and say “hey this needs to be placed”.

I am encouraged however that his strength and stamina are slowly coming back. In the fist week, he was wore out but 12 p.m. and ready for his nap. This week he stays up until 2 p.m. This is progress.

I will end this post with this:

Hi, my name is Petra. I just had a baby, his name is Lennon and he is 5 years old.

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  1. Oh how I feel for you Petra. There is nothing more frustrating then knowing your child and having people who don’t know him tell you how to do things and how he should be doing things.I am just going to ramble off a few thoughts as they come to me so it may not be very structured. I hope you won’t be offended by me sticking my two cents worth in, I know you’re already hearing enough from others.I could not get a clear indication from what you wrote if Lennon is being fed solids before his NG feeds. One thing we were always told was that you first give solids and then give the tube feeds. Giving the child an opportunity to understand he is hungry and then to attempt to do something about this hunger orally.When they give him a NG feed what is the rate he is getting it at?? Does he get it relatively quickly (over a 20 minute periods or less) or does he need to take it somewhat slowly (over 1-2 hours)? If he’s getting the feed slowly then you are right that he will never be hungry to eat his next meal. For any child with a chronic illness and long term food adversion the whole eating thing is going to take a loooooooooooonnnnnnnnnnnnnggggggggggg time … stressing the long there 🙂 In long time I’m talking more like years. These things come gradually. I gather they believe that since Lennon is now “cured” of his UCD he should be “normal”. This is nonsense and I am fully with you on the fact that you keep stessing that Lennon has always had a food adversion. That food adversion did not just come from his UCD, it is a way of life for him. We were often told our son had a food adversion because he probably knew that the food would make him sick. It’s a good theory but something about it doesn’t jive … how come from the moment we started feeding him solids he refused?? Let’s think about this … he was nursing, and nursing breaks down the protein. We started him on rice pablum and rice is relatively low in protein. So would this have caused a protein overdose?? Not likely … but something about his UCD made it so that he would not eat (the fact that he also had a lung disease would also be a factor for him). Guess what I’m saying here is that we don’t really understand why these children have food adversions, but they consistently do. They grow up this way and many have feeding tubes for their entire life. So you cannot just overnight change Lennon’s way of thinking so that he suddenly thinks food is great and is going to inhale it. His body – his mind, his energy, his stomach, his bowel system – is not tuned to work “normal”. So I am in total agreement with you that they are expecting far to much too soon.Have they talked about doing a calorimetry test?? test gives an idea of how many calories a person need in a day. It sounds like they are trying to push the amount of calories into Lennon that a normal active 5 year old would need. The range is very big for what is considered the normal calorie intake of a 5 years old and varies very much on activity level, but it can be anywhere from 1300-2300 calories a day. But as you said, Lennon is not that active, he easily tires, he never ate much (so his body has been able to grow on minimal calories before), his brother is low weight, etc. A calorimetry test will give a clear idea of what Lennon needs at this point and maybe stop them from trying to fight too much in him.It’s frustrating when the doctors/nurses/therapists won’t step back and look at the child as an individual but instead push the “norm”. In some ways if you are comfortable with doing the feeding then the best place for him would be home. Home will be better for the whole family and may stimulate him also to try be more “normal” and do the things he used to do. At home you can also try to work things at the rate you feel is proper. I’m not sure if they are pushing the types of food Lennon eats but I would strongly push to feed him what he used to eat. It may be unhealthy but it is a step in the direction of helping his food adversion … nutrition can come after, right now you want to see him eating orally. You can always top up with the nutrition end of things after he eats or in the evening (so he wakes hungry). The difficulty with going home is whether you will have the access to the other therapies you need when he is ready for them.As for replacing an NG tube … I am 100% with you on the frustrations of this. Thankfully we were told we may not place our own and that we had to go to Emerg to have it replaced. The first time they put a NG tube into James we did the air check each time to ensure it was properly positioned. He would cry and scream as if in pain everytime we fed him. I insisted this was not right. Several days later an x-ray was done of his chest and they happened to catch is abdomen on it as well … his NG tube was about 11cm too far in and was working it’s way into his intestines (hence the pain as you cannot do feeds as fast when the tube is in the intestines). So much for their air check theory. We never had any faith in that test afterwards as it obvious is far from fool-proof. After that they always x-rayed every time a tube was placed. James also had a weighted NG tube and supposedly with this kind it is supposed to be placed in hospital and x-rayed afterwards.You have made it this far without a G-tube so I can see your desire to avoid one, especially so close after surgery. Lennon needs time to heal. At the same time I will say that we found the G-tube a blessing. Many will say after they get it that they wish they had gotten it sooner. In no way would I say Lennon should be pushed to have one as his situation is different. I would be like you and want to wait it out, sticking to an NG that does not involve surgery until there is full proof that this is a long-term issue and we hope that it will not be.This is not medical advice, just thoughts of a mom who’s dealt with food adversions before and knows that the doctors/therapist can be quite unreasonable in their expectations … I’m guessing the majority of them have never had a child of their own with a food adversion.All I have to say is that is sounds like you’re on the right track. You understand your child and you want to do what’s best for him. You are not being unreasonable … so as emotional as it is stand your ground. Sometimes it seems so much easier just to give in and let them do things there way … but that does not mean that it will be easier for Lennon, and Lennon is the one you are trying to help.We will be praying for you, that you may receive renewed strength and cooperation from the doctors/therapists. And most of all that Lennon will feel ready to eat.

  2. Thank you for your ongoing support and understanding. You have helped more than you will ever recognize. You deserve a hug as you have become a friend who understands.

  3. My heart aches whenever I think of all the sick kids out there and all the parents trying to do what is best for their child to help them get better. Although I can never understand what another person is going through I can very much remember the feeling when we were going through it. Living in a hospital where times seems to stand still for you but the world keeps ticking around you. The feeling of not knowing where to turn and not having anyone who understood. We had a lot of support for which I am forever grateful, but there is nothing like hearing from another person who has at least a vague sense of what it’s like to live with a chronically ill child, to spends weeks or months in the hospital, to know what you’re talking about when you start talking medical lingo, to offer advice on things they’ve tried.I wish there was more I could do to help, but from where I am I know the most powerful thing I can do is pray, and so I will continue to do that.

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