I almost always avoid the topic of my two tubie kids in passing conversations if I can possibly help it. (Official definition of a tubie: kids with feeding tubes. In this blog this term shall herafter refer to kids with feeding tubes, trachs, ET tubes, IVs, dialysis catheters, or any other type of tube that I don’t know about yet.) Sometimes the topic just comes up naturally. Sometimes it’s purely out of my control, like when someone (usually a cashier or some such person) makes the innocent mistake of calling my four year old the baby sister. Which typically then results in an indignant five minute monologue from the offended little lady of just why she is not the baby sister. That usually leaves me to sputter a hasty explanation to the now embarrassed individual, or just smile blandly as I make my exit and leave them to wonder whatever they like. Sometimes an explanation is necessary, like when Jed’s world collides with the Mini’s world, schedules conflict, and I’m not always available like I’d like to be.
There’s a certain reason I mostly avoid the topic, and it’s not because I don’t like my tubies. It’s called pity. Tell a person, especially someone knowledgeable about health, about the other sibling and the reaction is almost universally the same. The eyes get wide. The mouth drops open. Are you serious?? And then there it comes, clouding into the eyes, gushing out the mouth. Oh I’m so sorry! How do you manage? That’s crazy! I can’t imagine! Essentially the information results in a flurry of remarks that sum up to “Your life must be so hard”. The first few times the torrent of well meaning comments hit me, I had no idea how to respond. I almost felt like I should put on a sad face and try to look sufficiently miserable in order to fit their expectations. Experience is a good teacher though, and now I’m slowly perfecting my response. It boils down to this, perspective is everything.
First off, I don’t view my kids as tragedies, challenges yes, but not tragic. That’s the most fundamental difference between my perspective and a lot of other’s. Secondly, I also don’t consider my life hard. Christians who live every day in fear of being beheaded for their faith in other countries have a hard life. Women who are treated like cattle in the Middle East have hard life. People who live their entire lives living hardly better than animals in the South Sudan have a hard life. I do not have a hard life. Some aspects of this situation are very hard, absolutely yes. But as for our life in general, no, we are not drowning in misery. And thirdly, I firmly believe God is always bigger. Bigger than you name it. He is bigger. He has a funny way of proving it too. For instance, in the Bible when Elijah was sent to hide by the brook he faced a big problem. He was wanted by the authorities to be killed, he had no food, and he was sent to go live off nature when nature was in the middle of a horrible drought. Talk about bad odds. But God arranged for food to be brought to him twice daily by ravens. A small bird did a small thing, and it was so miraculous that nobody but God could have made it happen. Big problems often are accompanied by big blessings. Believe me, I could tell some stories. God hasn’t handed us two special needs kids and then walked out on us. He’s doing a very good job of managing things, I assure you. I don’t have problems. He has problems, I’m just along for the ride.
And now that I’ve got that off my chest, here’s a general update on the tubies to answer some of the questions we get most frequently.
- Jed is doing well all thing considered. He has hit just about every problem that could be potentially devastating that you can think of, from an infection to crazy electrolyte levels to possible seizures, but so far none of them have set him back for more than a couple days. I attribute that completely to all the people praying for him and God being gracious to us. I’ve had more than one doctor express surprise to me that he’s gotten this far. We aren’t anywhere near bringing him home, but 50 days is a splendid beginning.
- No, Jed isn’t coming off of dialysis anytime soon. He’ll have to be on it for at least a year to get big enough (around 22 pounds) for a kidney transplant. We can take him home when he is stable and healthy enough, and run the dialysis at home until that time. The big catch to this plan is his lungs, he won’t qualify for a transplant if he is still vent dependent. So, getting off the ventilator is the main objective for him.
- Jed is at a hospital two hours away from home, so no, we don’t go see him every day. Since the Mini isn’t the sort of kid you can just drop off at the babysitters, the Mister and I take turns going. Between the two of us, he gets seen three or four times a week. He is very well taken care of, and his “people” do a great job keeping us informed. It helps that we’ve had an entire year to practice the art of being pesky parents who ask too many questions.
- The Mini continues to reign supreme from her corner of the living room. She’s made small bits of progress with her therapy. She’s stronger, doesn’t gag as much, and touching toys doesn’t stress her out as much. She’s still not big on exercise, participating mostly with a very prominently protruding lower lip and whatever complaining grunts she can manage to vocalize around her trach. I don’t blame her, if someone draped me over a rubber ball and tried to make me do push ups, I’d stick my lip out too!
- We’ve started giving the Mini a blenderized diet of real foods (sweet potatoes, yogurt, avocado, ect) that we make ourselves through her feeding tube along with her regular formula. I am sold on it, pleased out of my head in fact. The constant gagging and throwing up has all but stopped. She acts like she has more energy, and even her therapists have noticed her acting more alert and responsive. I can’t fathom why this method isn’t more widely recommended by the experts, the difference it’s made for us is huge. If Jed ends up coming home with a g-tube, you can bank on it, that boy is getting his bananas experts or no experts! (And yes, we’re very careful about trying one food at a time to check for allergies.)
- On a less happy note, there’s some concern about fluid in her head. Nothing has been decided yet, but a tap to drain off some of it may be in our future. There’s also some less than exciting opinions about the looks of her brain, and as it often goes with medicine, time alone will tell what exactly that will mean for her long term. Weaning her vent has also been rather unexciting, we’ve been up and down on settings a bit but not actually been able to make permanent progress. Patience is not my favorite thing, but I have a sneaking suspicion I’m supposed to be learning it.
1 Kings 8:56 Blessed be the LORD…there hath not failed one word of all his good promise, which he promised…