We have had a week to adjust to the removal of Corrigan’s old “tummy tail” and I have to admit that there was zero adjustment needed!
What a relief to have that ugly (but functional and necessary) tube gone! It makes me so happy that I am going to just go ahead and add a few more exclamation points for emphasis (!!!!!!!!!!!!!!!!!!!)
Here are what things looked like since the end of April…
We went through a lot of tape and safety pins over the last few months. We tried so many different brands of tapes to try to spare Corrigan’s skin but no matter how much they claimed they were meant for “sensitive” skin he still suffered soreness and welts that would last for days. Plus, the tape gunk was a disaster. After awhile, because the rubbing necessary to remove the residue was causing more harm to his skin than good, I just kind of gave up on ever getting it all off.
Some more of his baby chub has disappeared, he has grown a little taller and sprouted some more hair…just look at my little guy now!
I’m sorry Corrigan. Was I not supposed to mention the baby fat? The hair? My bad.
The button does allow more leaking around the stoma than the PEG tube ever did. It really is kind of a part-time job making sure that I keep that area clean and dry so that the stomach acids do not harm his skin but it is worth it.
His shirts fit normally now, I do not have that daily fear that his monkey adventures will lead to his tube getting caught on his foot or something while climbing and ripping it from his stomach. It is pretty flush to his abdomen and he has not, as far as I have ever noticed, touched it once. Honestly though, he never messed with his PEG tube either. Corrigan has a real talent for “if I ignore it, it doesn’t exist”-much like how he listens to my orders to stop climbing up on the changing table with one hand while holding a full sized adult pillow in the other. ( I really think that Corrigan thinks that the changing table is a cot or something, he is determined to make a nest up there and nap!)
It all feels like second nature now. It is such an utterly amazing feeling to not have to stress about Corrigan’s intake any longer. He still eats by mouth but just not enough to sustain his nutritional needs and we are continuing to work with an oral motor therapist to encourage more natural eating. Of course, we hope that he will not need a feeding tube forever. We pray that something will “click” for Corrigan and, one day, things will just happen naturally and smoothly and we can say goodbye to GI Doctors and medical supply companies…but until he reaches that point (and he may never) we are so incredibly thankful that we pursued enteral feeding!
Finally, I wanted to share this photo from the above series. Typically, the only time that Corrigan is “still” is when he is watching something on DVD and it really has to catch his attention to make him stop completely. This photo cracks me up because it looks like he is watching something absolutely heart-stopping on the television.
In reality, he was watching Mater, on Cars, drive in reverse (“I’m the world’s best backwards driver!”) and, I suppose, that is as heart-stopping as it gets for a 27 month old boy. It is the same look that I make when I find him on top of the kitchen counter with one leg up on the microwave!