Cardiac and weight updates

The nutritional tests that were done a couple weeks ago have come back.  They are normal, so the team does not feel that the cardiac issues are related to a nutritional issue.

The plan now is for Peter to have a cardiac catheterization to see what the cause is for the increased cardiac pressures and enlarged ventricles.  The cardiologist kindly called me at home to discuss the procedure and why he feels we should proceed with it.  Basically, he feels Peter's heart itself is not the issue, but since this is a fairly big change since his last cardiac imaging from two years ago, the cause needs to be found before the heart itself does become compromised and begin to work less effectively.

Although it only takes a little bit of room for me to type this up, the amount of discussion and consultation that went into this decision has been quite detailed and involved several top doctors at Boston Children's Hospital.  I am a little worried about the catheterization, but only because I know it is invasive, not because of doubt on the parts of the physicians.     

On the weight issue, I can't see that Peter has lost any more weight, but it is unclear if he has gained any.  I can tell he has a little more fluid in his belly, so that adds some more weight to the scale, but his arms do not seem to be measuring any less around, so I will venture that he is at least holding with his real weight.  We've definitely bumped up his calories since the last visit, with another 80 ml of formula per night, an additional 20 grams of Duocal per day, and about two to three tablespoons of peanut butter per week.  (Skippy now makes chocolate PB and honey PB, which he thinks are terrific.  He had given up on plain PB a long time ago, but thinks these flavors are great.)

Peter will be eight years old in just thirteen more days!!  He wants Klondike bars as his "cake," and a lengthy trip to the library so he can look at lots of books on architecture and geography.  He is such a character! 

Overnight feeds with no leaks!

I have to share a great item with those of you who use G-tubes.  I came across it from another parent's site, but it took me 7 years of G-tube feeds to find out about it, so I am trying to spread the word from this blog as well. 

It is a little device used to secure the feeding connector and keep it from disconnecting from the port of the feeding tube.  It does not put holes in clothing like safety pins, nor is it sharp and capable of piercing tubes or skin like a safety pin.  It is reusable and we are still on our first one even after 4+ months of use. 

It is called an AMT Clamp Feeding Tube Connector.  I have been able to obtain it through both of the enteral suppliers that Peter has had.  (We just switched to a new provider last month, and I am so happy, but that is anther post for another time.)   Here are photos of the AMT Clamp, along with reference numbers and what it looks like in use:

Before clamp is attached to port. 

(I always tape medport closed to keep it from opening overnight, 

in case you are wondering why it is taped.  You could use the

 clamp without tape on the medport if you wanted to.)

       With clamp attached to port.

                                                  

 Clamp is tiny, flexible, and reusable

 As you can see, we run Peter's tube through the neckline of his shirt, rather than under.  For him, that works better at keeping the feeding tube from kinking overnight. 

I hope this information helps other tube-feeders out there. We've had no feeding tube leaks and no torn bedclothes from safety pins since starting with this product!