The last time Caed needed a medical backpack, the year was 2009. It held his feedings/pump during a time when he needed 24 hr. enteral feeding via G-tube. This little blue backpack sits on a shelf up in our closet. To see it, brings both smiles and tears.
Today, the UPS man delivered a box to our door, and when I opened it, my heart stopped for a few brief seconds. Not sure I was prepared to see another backpack! The rest of the medical supplies packed inside honestly triggered nothing in me, but it was like deja vu staring at that bag.
Yet another chapter of Caed's medical journey will soon begin...
He has always been small, and of course Todd and I are neither one expecting any of our kids to be 6 ft. giants. However, Caed has always been the one that has barely hung on the growth chart for years. Finally this year, with him falling OFF of it, his doctors grew concerned. Nebraska wanted us to go see a Pedi Endocrinologist. This has not been our first rodeo with an Endo Dr. We saw one in Dallas when Caed was 5 or 6. At that time, they felt like he was growing well (considering...he was also being supplemented with tube feeds), and saw no need for any help such as growth hormone therapy, which most Short Gut kids need.
Now fast forward almost 10 years, and things have changed. He has undergone several tests and the doctor feels he desperately needs help in growing. Almost every Short Gut parent I have talked to (either in person or via FB support groups) have been shocked that we haven't needed growth hormones before now. Most all of these kids need it due to the fact they are missing the majority of their bowel and cannot absorb nutrients the way normal people do. Malabsorption has been our unwanted, evil houseguest for 10 years! People are shocked when they are around Caed very long and see just how much that child eats! "Where does he put it?" they ask. ha! I won't go there.... Let's just say 'what goes in, typically goes straight out!'
We have been on this new journey (concern for lack of growth) for most of the year. We have seen changes in Caed. Ones that have secretly bothered us. Caed is different. Sure, we still see that crazy, funny side to his personality when he's around those he trusts, but not as much anymore at school. He seems more withdrawn and has struggled greatly with confidence. (anyone who has ever known Caed, knows he has always had more than his share of confidence!) :)
Things have occurred this year. Awful things have been said/done to him either unintentionally by friends, etc....or intentionally from strangers. Mama Bear has had to restrain herself on more than one occasion. Some of it is just part of growing up. But...my sensitive heart wanted so badly to shield him from hurtful comments regarding his size. People (typically) watch their words with someone who is overweight. Yet, I've found that no filters are in place when someone is underweight. Those who desperately want to GAIN weight, but can't. Commenting to them about how small they are only deepens and twists the knife that is already stabbed into their hurting heart. And no, "just eat more!" is not the answer. At least not with someone who has lost the majority of their intestines. Pain and frequent trips to the restroom will most definitely occur, but thanks for your "expert weight gaining tips." Lol Caed's doctors always used to laugh and tell him "Hey, look on the bright side (of SBS)...you'll NEVER have to go on a diet!" It's true, and we are thankful for that. I'm betting as a girl, that would be the best news ever. For a teenage BOY...not so much right now.
There are still a few hurdles to jump over and we are praying (no pleading!) with God for a full green light. Yet not forgetting all the ways He has got us to where we are sitting today. We continue to wait (almost literally) on pins and needles, as well as pray for his body to absorb the hormones. We honestly have no idea how well it will work or how much time his body has before his growth plates close.
This decision has not been made lightly. I was terrified in the beginning. Yet...the alternative (stop growing altogether) scared me more. We didn't want to do anything that would cause him more harm. Peace is now overflowing, and we are thankful for doctors who not only stay on top of his health (even though we are 1000 miles away)...but also just love our boy and want what's best for him.
So we wait. Patiently, expectantly, and full of hope.
"He who began a good (miraculous) work in you, Caed, will bring it to completion at the day of Jesus Christ."