An excellent quote by Ralph Waldo Emerson. This is what we are hoping will happen soon with Ian. Last Thursday, Ian had a bilateral myringotomy with tube placement. This is just a fancy name for saying he had tubes put in his ears ;)
We arrived early in the morning for the surgery and were back in our own home four and a half hours later. It was amazing!!!!!!!!! This was a very new experience for us. I was awesome to be able to have a surgical procedure completed with anesthesia and then come back home. After all the admissions and procedures and surgeries, we were more than happy to oblige!
Ian had the tubes placed for multiple reasons. Yes, he did have 4 ear infections in the last 12 months, but the main reasons for the placement was for fluid accumulation and treatment tolerance. Ian has been harboring fluid in his ears for over 9 months now. Even though it remained uninfected most of the time... (I thank my xyltiol nasal spray theory for that one, thank you very much!)... it had been present so long that he acquired Glue Ear.
Glue Ear is a condition where negative pressure is produced from altered eustachian tube functioning. It stems from a condition called Otitis Media (ear infection) with “Effusion...” or (OME). It can be the result of a chronic ear infection, or from a viral infection. Over time, this fluid can become very thick and impairs hearing considerably. I guess it wouldn’t be enough for Ian to get “just lots of ear infections.” This OME is highly correlated to eating while lying down, especially in the first two years of life.
Well, if can happen....... it seems like it most likely will with Ian. he has had to deal with so many complications from treatments. Since he eats overnight every night, with his G tube, since September, this did NOT surprise me. The pediatric ENT said that he was able to break, suction, and extract all the fluid that had thickened inside Ian’s ears. he placed the tubes without any problems.
The tubes remain for a period of about 6-12 months. Hopefully, they fall out naturally, and on time, and Ian will not need more. However, sometimes, when the causes are continuous, multiple sets are needed. We do not know how long the tubes will last, nor how long Ian will be receiving overnight feedings. With his volume sensitivities and lack of oral eating at this point, it does not seem to approaching anytime soon.
It seems as though Ian has already started to trend to progression. He has started saying the “du” part of DUCK and we sometimes even get the “c.” the days after the surgery, he even started saying da-da a lot. It seems as though his hearing is much clearer........... although I don’t know if he listens any better! The time-out chair is still getting use ;) Hopefully, this will be a big step in the right direction!!
Feeding the Bed
This morning we had another feeding tube disaster. In the tubie world we call this “feeding the bed.” A person with a feeding G tube button like Ian’s wears and extension. One end hooks into the tube and rotates to lock it in place. The distal end is an open “female” port. This is wear the feeding bag attaches to the extension. There are usually two ports on the distal end of the extension. The feeding bag tubing connects by a “male” end, a barb. The plastic barb end secures into the rubbery port on the extension. This is supposed to be a *tight* connection and most of the time doesn’t cause any issues. A handful of times, the attachment becomes loose, or even disconnected.
What happens now is instead of the feeding bag that is hanging overnight pumping into the extension and into the belly, it pumps into the bed. Since the barb is not connected to anything, to food is pumped directly into......... NOTHING!
We don’t know how long Ian was disconnected and feeding the bed this morning. After doing this many times, you begin to be a pretty good judge of how much is in the bed. This morning looked like about 6-8ounces of his 17 ounce feeding. This doesn’t mean it was detached that whole time. What I left out before is that when the port and barb are not connected, not only are you “pumping” food in nothing and onto the bed..... but the extension is now unlocked and not connected to anything.
Extensions must be unlocked in order for anything to flow through them. When they are unlocked and not connected to a feeding bag tube, contents of the stomach are released. At times, when air needs to be “vented” or “burped” out in a release, or when tummy contents need to escape and decompress before re-entering the stomach, this is a good thing. however, when a child is sleeping overnight, this is a bad thing!! Ian had also been releasing all of his gastric contents onto the bed. Any formula in his belly was running out, along with bile and other gastric secretions.
The result is a HUGE mess..... and an awful smell. See, when gastric contents are released, it usually smells like vomit!! Although, it is usually smelled because someone has released the contents by actually vomiting, not leaking all over the bed. Sorry for the vivid pictures being painted here, but this is what happens. AMT does sell a clamp, along with other manufacturers and their deices. These help to prevent “disconnects.” These are wonderful, but do have their cons.
The one we use does get in the way overnight sometimes when administering medications through the smaller port in the extension. The clamp sometimes covers or blocks the port. Three in the morning is not the time when you want to start moving tube equipment around in the middle of the night....... However, after this morning, I think it is WAY worth the effort to avoid troubles like this one!! Feeding the bed is no fun!
Here are a few pictures and videos to give you a run down of what feeding, caring for, and working a G Tube button can be like. There are other types of buttons, but a lot of the basics are universal.
AMT MINI ONE G Button Continuous Feeding Extension
Port End of Feeding Extension with Feeding Bag Barb Inserted ............. and with CLAMP attached
AMT G Tube Button Introduction: About Ian’s G Tube Button:
How to clean and replace an AMT G Tube Button like his:
Continuous Feeding with Ian’s AMT G Tube Button:
To Eat OR Not To Eat
Ian is also beginning to improve on his feeding skills. He attends weekly feeding therapy and has been making progress. Today he tried some Chex from ChexMix. he ate the rice and corn Chex at my initiative, but refused to eat the wheat Chex. He only ate the other because I put it in his mouth, refused to let him spit it out, and made him chew it a few times. Luckily, he liked it and continued to eat them. We will be visiting with his feeding therapist tomorrow morning. It seems as though things are moving so slowly that we hardly ever make any progress, but if I look over the long term..... it feels as though we have traveled much farther. It has been 7 months since his G tube went in and he has gained over five and a half pounds. That’s a long cry from vomiting every morsel.
Staircase to Playtime
One of Ian’s favorite things to do now is walk the stairs........ yes, you heard me right....... WALK the stairs. We have taken down all the baby gates because he has mastered the stairs. Now, he simply walks them. He used to bump on his bottom sometimes, or maybe go down backwards..... Then for a while he would walk down holding on to the staircase spindles. But no, now he just walks up and down without holding anything. How his legs are long enough to do this I have no idea. The kid is barely 30 inches tall and thinks he 6 feet tall.
Sometimes his little foot will catch some behind him, but miraculously, he doesn’t let this get in his way. He is very flexible and drags it behind him with his unbelievable balance until he manages to work it out. I am going to try and catch a good video here soon and post it.
he also is putting his own clothes in the hamper each day and picks out books for bedtime. Each day he amazes us with new things. While we are excited and happy about watching him develop and progress, it is somewhat sad to see all the previous milestones we delighted in, disappear. As he begins to talk more, I will miss the babbling and cooing noises.... as I miss the needing help to crawl up on the couch.
His little bendy legs get him just about anywhere. Today, as he crawled onto the couch, he managed to get his leg up high enough that his knee was at nose level, then pushed himself up and onto the furniture!
Another day, another night of the life of a tubie toddler is gone and we are preparing for a whole new round tomorrow....... who knows what might happen next!?!?