Ding Dong The Tube Is GONE!!!!

As I’m sure some of you have figured out, today’s tube removal was NOT planned.

Braeden had an incident about a month ago where the tube pulled out and since then has been having leakage and has been complaining from time to time about pain. Not enough that didn’t seem normal so we changed tubes, did all the things we would normally do.

Yesterday he had lots of leakage so I put in a call to the GI and she had us pop in this evening to check it out. It came down to two things. A.) His site was tightening again, causing some pain and possibly B.) His tube was not long enough for the “track” (the channel to his tummy) and the tube was being inflated mid track instead of at the base.

Either way, meant some further intervention that I was uncomfortable with considering we are talking about taking this damn thing out in 1-2 months.

So, the doc says to me, “If it were me, I would just go home and say it fell out…” Mind you, he has a good portion of scar tissue around his site… this thing is not JUST coming out. I said to her, ” are you telling me it’s ok to take out?” After a little more discussion, she finally said, “lets just take it out!” So, one last restraining and pop! it’s gone!!!!!

Mr. B is not entirely happy about this but who would be… He just lost part of his little body today. Something that has been as part of him as anyone’s belly button, fingers, or any other part. He is shedding lots of tears and asking for button right now. He will heal and move on, his button will heal and we will move on, and one day my emotions will settle and I will have this as just another memory. 12/12/12 is said to be a lucky day… I would have to agree.

Feeding Therapy for the little man and plain ol’ therapy for mom

So, the question I get asked a lot lately is, “What goes into feeding therapy?” or “How do you get him (my son) to eat?”
The answer? Unfortunately, this one is not so simple. So, if you really want to know, let me enlighten you.

What a good day looks like…
7:00 am, 11:00 am, 2:00 pm, and 6:00 pm, Braeden sits and drinks 3 ounces of formula while watching a favorite video while I prepare his solids. His solids consist of 2 ounces of a puree’d meal (spaghetti, soup, chinese food, indian food, you name it!) and 2 ounces of a fruit/fruit, veggie combo. By the time I return with his meal, he has consumed his milk and is ready to consume his solids with no “refusals” and is able to be offered water/juice with the rest of his meal so as to fulfill his “liquid requirements” for the day….

Yep, this is a perfect day… and, for the most part our last 3 weeks have gone like this. We have had minor refusals, until about 5 days ago. That’s when he started throwing his cup and hitting and we quickly became aware of what a bad day can look like…

7:00 am, Braeden sits and drinks a little bit of his milk while you prepare his meal while watching a favorite video, we sit down with his food and get a few bites in before needing to require him to drink… he refuses, we count to 3 and state take a sip or no more video… he contemplates… 1… 2…3… Video off. Take a drink and you can have video… He drinks. Video resumes, feeding resumes… 10 minutes later, take a drink or bye bye video… 1… 2… 3… video off, this time he goes as far as smacking the cup out of my hand. Pick up all of his food, cup, etc. and leave the room, come back 5 minutes later and he drinks. This pattern goes on for 1 whole hour! …and we get to feed him 3 more times in the day.

Needless to say this is frustrating and exhausting. I know we are dealing with behaviors that have to change in order for him to understand that eating is something that MUST be done all of the time. But, very time consuming and draining. Based on our Feeding Therapist, we are really lucky that this is the first we are seeing of some of these behaviors since he has been in the program for 3 going on 4 months now and most lose WAY before this.

For those out there that are thinking, why not just not feed him… he’ll eventually get hungry and eat. Here’s a fact… He won’t! He’ll starve himself. He like many kids who have been tube fed from early on (some since birth) have no concept of “how” to eat, they have no concept that by eating something by mouth, their tummies will feel full. They make no correlation between eating and feeling good. Additionally, most can’t handle how something feels going down their throat (smooth, liquid, or not) and their instant reaction is to vomit… and in my son’s case (and many) he has had a surgery to prevent him from vomiting.

I know the behaviors are temporary and we will get through this next hurdle but please know if I’m late anywhere, don’t want to go out, or I am in a pissy mood.. it’s not you, I’ve just had a rough day getting my child to do what everyone else does with not much thought… EAT!

It’s Really Happening

After months of fighting to get approval for Braeden’s Intensive Feeding Program, we received approval.  Then we went on a waitlist and were finally given an initial assessment in December 2011.  Then we were finally given a start date of March 12, 2012 about a month ago.  Everything has been hurry up and wait, so I’ve had to kind of store all my feelings about what this really means.  That is until today, when I received the confirmation email that the docs will be arriving at our home 7:30 am Monday.

That’s when it hit me like a ton of bricks… It’s really happening!  My stomach is wound into a million knots of excitement and nerves.  I feel like I’m placing a huge bet on the prized horse… If everything goes well, the pay off is going to be HUGE!  And I can’t even go to the place if things don’t go well (though it does sit at the back of my mind.)

What does this all entail? Starting Monday (Yes, I did just say MONDAY! Just 5 short days away!!!!) Braeden will have an In home intensive feeding program start.  The docs will come in and spend 10 hours a day for 5 full days at our home working with him to begin the process of tube weaning.  After the 5 days, they will do follow up visits on either a monthly basis (or more if necessary.)  The ultimate goal will be to get Braeden to consume ALL of his calories by mouth via liquids and puree’s.  Once he has established that, they will introduce texture.

It’s super exciting, yet somehow I ended up in a puddle of tears tonight.  All I can think is that so much of his life (our lives) has been consumed by this tube.  It’s a lot to process that this chapter will finally be on the road to closure.  It certainly won’t happen overnight, or even a week… Not even a month or two.  But, it’s finally happening.

Words

The boys are officially 27 months and well, delayed in speech. And yes, I know… Boys tend to be a bit delayed. And yes, I know, they are twins. Both of which tend to lend to delays. Add the added factor that Braeden has been assessed at about an 18 month old (some assessments have him younger, some older.) So, yes language is not our strong suit at the moment. But when they talk, they are cute. Braeden calls a Giraffe a Raf, an elephant gets called ell-la-la with the addition of the sound of a raspberry. Damon gets a funny little voice when he says open, which really comes out as Opp-en. Damon’s ultimate cuteness was yesterday when he proudly announced “I kit-te… Meow!”
It’s fun to see both boys experimenting with more and more language and seeing Braeden use sign language for a lot of the words he can’t say clearly.

Reality sucks

Having a child that doesn’t have enough communication skills and has a feeding tube sucks.  I wish he could tell me when something isn’t right or something hurts… He does but not in a way where I fully understand how to make it 100% right.  It feels like we jump through hoops and have to have doctors question us constantly to convince them that there is something wrong.  Ultimately, it all works out and we get it resolved but the process getting there leaves little to be desired.

So what is a parent with no understanding of what it’s like to have a tube to do? Read Blogs… Lots and lots of Blogs.  If you don’t know of anyone with a feeding tube… do know this, there are a TON of conditions that require people to resort to a feeding tube.  So, reading these blogs I get to “know” the individuals writing them and all their afflictions which are heartbreaking.  But, their words give my son the voice he doesn’t have.  They, all those people whose blogs I read, help me understand what having a tube is REALLY like.

This is a quote from a blog called Entropy and Light….  “The tube site itself is at its basic level a stab wound kept permanently open by a length of hollow silicon, that I must not allow to heal.  So to heal the emotional hurts of having it placed and all that went with it required me to be very clear.  I had to heal those memories, because almost everything I do in life; the way I dress, move, bathe…..let alone the facts of feeding relate to my tube.  I can never forget it, even for a minute.  My physical abnormality is constantly there.”

Ugh… but, pretty much sums up what I fear I have suspected all along.  With this I “pray” that insurance will get their heads out of their butts and approve my sons Intensive Feeding program and we can get rid of this damn tube…. So that my son can live a “normal” life or at least as normal as our family gets.

A chaotic but good day

The day started off sluggish as our family was out late the night before, a Giants game honoring the Girl Scouts (our troop had a good time.)

After Braeden’s surgery, we were told they would contact us when his new G-tube button arrived, an AMT mini-one button.  Well, after 3 days of playing phone tag it finally was available (I suspect it has been here but no one got off their butt to call us.) And of course they “needed” to place it so we were at their (the hospital’s) mercy for an appointment.  Which unfortunately came when they called at 10:40 this morning and wanted us there by 11:30.  Need I remind you that I am single parent during the day and we were out the night before… didn’t make for a good combo.  Anyway, long story longer after running to Oakland, we got our new button (thankfully seems to be relieving the pain!) and had to rush back to Walnut Creek for Occupational therapy.

This afternoon was the best… Braeden wanted to drink some milk.  Something he hasn’t done in almost 5 months.  He ended up drinking 4 ounces of his Pediasure and only needing the remaining 4 ounces tubed.  Very exciting! I know for the average folk, probably doesn’t mean much but for us… This is HUGE! Our son was tube weaning and doing well when he hit a brick wall… or in his case a too tight Nissen fundoplication (i.e. the opening to his tummy that was surgically tightened to prevent reflux was not loose enough for a high volume of food/liquid to pass.) I am beaming at this accomplishment.  Later at dinner time, he took 3/4 a jar of baby food.  Another huge step!

In some ways, it feels like we are back tracking a bit.  But, it really is a reminder that sometimes in life we need to step back to be able to move forward.  Now that we know Braeden physically is able to eat, we have a do over in the eating department.  Back to baby food for a bit but maybe by this birthday, he can devour his Elmo cake 😉

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