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.

Contact Petra