it was bound to happen sooner or later

We left the house.

Not just for a doctor’s appointment either.

In fact, we left for no. reason. at. all. On purpose.

Weird.

Sunday was not only Mother’s Day but it was Mark’s birthday. All he wanted, for his birthday, was to get out of the house and go for a ride.

Earlier in the week, the home medical supply folks came out with Corrigan’s feeding pump but the smallest size backpack that they had could have fit Connor. Not a two-year old boy. They brought an IV pole but there is no way, short of stealing one of the cage-cribs from the hospital, that Corrigan would ever handle being tethered to it.  The company later called to tell us that they had special-ordered him a really small one but it would be 10-14 days until it arrived in stock.

I looked online and those mini-backpacks specifically meant for the feeding pumps are expensive.  Like, $80.00 expensive!  Not going to work for us, at all…so we headed to the mall to find something that we could convert into a pump bag for the time being.

We found this Spiderman backpack at Sears (for $20.00 <–riDICulous, yes I am cheap)

We picked this one because it is a soft, felt-like material instead of that sort of hard plastic type of backpack.  In hindsight, I can see how this might get dirtier quicker but it also seems pretty washable.

I found an old backpack in the closet with similar-sized black straps and did a little re-purposing surgery! (Wait, is it really re-purposing if you take a backpack and turn it into a backpack? shouldn’t I have to turn it into a toilet paper holder or something to count? I don’t know.)  I converted some of the straps  into velcro tabs for inside of the back to hold the food bag up higher than the pump which sits safely in the bottom of the pack.  I also cut off of the clips from the old bag.

Then, I took it down to Petra’s who sewed all of my pieces exactly the way that I wanted in about ten minutes. (Thank you Petra!)   She and I decided, earlier, that he probably needed some sort of chest strap to keep him from ripping it off of himself.

(I love how his hair is so strawberry-blonde in the sunshine but blonde indoors)

I also had to make a spot to allow the tubing to come outside of the bag to attach to Corrigan.  I learned, pretty quickly, that I need to figure out something that allows me to cinch up the extra tubing when he has the pack on his back and is playing.  It quickly slipped out and could have been a tripping hazard.  Maybe a little strap with a snap to wrap up the cord as needed?

I had been letting him play with the pack on, with the weight of the pump inside, to ready him for when we really needed to hook him up and leave.

This was the first time I had hooked him up tried feeding him in this manner. Surprisingly, he did not fight it as much as I thought he might though he didn’t have it on his back long because we were heading out for a drive. In the car, I simply hung the pack on the dry cleaning hook that is above the windows in most all backseats.

When we were in the car, leaving the gas station, Mark said, “Where do you want to go?” and I heard myself say, “Wherever you want to go, I brought enough formula to keep us out until 10pm if you want”

Shocked he replied, “Those words are the best birthday present ever!” to which I admitted that uttering the sentence was also followed by swallowing the vomit that immediately came up when I thought about THAT MUCH TIME away from my safety-net.

But we said we were going to use this opportunity (the g-tube) to experience a better life as a family so what else could I say? I just prayed that I remembered how to do the pump properly and that nothing went wrong…because Corrigan will not take his formula (by mouth) in the car and oh-my-gosh-where-are-you-going-Pennsylvania!?!?!?!?!?!?!?!?!

Off to PA we went…and as you can guess, everything was fine.  As long as we are talking about the pump feeding, that is. If we are talking about how poorly behaved my toddler is, in public, then no. Not perfect. Mother’s Day dinner spent in the car with a toddler than cannot sit for more than 3 minutes in a high chair without a meltdown? Not so awesome.

Mark reminded me that Connor was raised in restaurants and malls ( back when I worked and rarely cooked) and Corrigan has been raised in hospitals.  Corrigan doesn’t know how to act, in public, because he has had so little practice at it.  I am okay with practicing things as long as it isn’t causing me to waste money. Ordering food that I cannot eat because I am sitting in the parking lot doesn’t thrill me…but I can handle walking the mall and doing shopping cart practice runs.

And the practice run for the feeding pump? Smooth as silk. He had two pump feeds while we were out. One on the way up and one on the way back. In the middle of both, he fell sound asleep as well.  Couldn’t have gone any better…so it was a good day after all.

(taken from the backseat of the car while going 60MPH)

I would love any advice from experienced moms on how to do a better job on his backpack and also any tips that you might have about any of it at all!  Gimme all of your knowledge, I am a sponge!

10 thoughts on “it was bound to happen sooner or later

  1. Mindy, I’m happy that things seems to be working out OK. I know it’s not easy on you or Corrigan, or the rest of your family, but it’s great seeing all of you get out. I’m glad Corrigan’s doing well.

    As for the photo, you know how I feel about “road trip photography” and this is a good one. Not easy to do going 60, I know, but you captured it well… 🙂

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    • I totally thought of you when I shot it, Glenn! I used to have a set, on Flickr, that was titled “life at 60mph” and it was just photos on the road, similar to yours…but I havent done it in a long time. I am glad that you like it!

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  2. I know I have only posted once before and you don’t know me from Adam, but I would totally like to help you out. I have one of those spendy little backpacks. It’s brand-new, never been used. It has been gathering dust for awhile in the back of the closet, but you are more than welcome to it. I still have the feeding pump too. It is a small, easily portable one (it’s a Kangaroo). I can easily pop both of them in the mail for you, just as soon as you send me your address. I would be so happy to have them going to good use for you and Corrigan than have it gather even more dust in my home. I remember what it was like to have to deal with very spendy DME and the hoops we had to jump through to get it. Just PM me. It can be in the mail this afternoon or first thing tomorrow.
    I am so glad that you all are adjusting to the tube well. It does make things so much easier. You will all develop a new routine soon enough.
    Take care and much love from another UCD mom.

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  3. Came over from my blog where you asked questions about our backpack.

    First of all, Corrigan is adorable, and I’m going to go learn more of his story after this comment.

    Unfortunately, we did give our super-mini backpack away. Sorry!! I think every kiddo on a feeding pump needs to have one. They truly make life easier for the whole family. Our insurance company covered ours (an Enteralite Infinity Super-Mini Backpack), but I understand they can be costly if your insurance won’t cover.

    I think what you did is brilliant! The only other thing I can tell you about the pack we have is that inside he bag, there are Velcro tabs that wrap around the neck of the bag to keep it hanging upright, as well as tabs that wrap around the pump to hold it in place. I would guess this *might* be why you keep getting alarms. If the pump flops over, it would kink
    or pinch the tubing, and if the bag doesn’t stay upright, the formula can’t feed right. These Velcro tabs would be easy to add in a modified pack like the one you’re using.

    You can also tuck extra tubing inside these Velcro tabs to secure it & prevent the problems you were having.

    Wishing you all the best of luck!!

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    • thank you for the information! I will find out if my insurance is covering one. I did make a velcro thing for hanging the bag inside of the pack but I didn’t think about how to cinch up the extra tubing.

      I think that I was getting alarms because the man that came out to train me never showed me how to squeeze the air out of the bag. I learned how to prime the tubing in order to get the air out of the tube…but the bag was full of air too. I think that it might have been causing the beeping. Once I learned (from a website, no less) how to squeeze the air out of the bag before pumping, it hasn’t beeped again.

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  4. I was checking into super minis when I came across your blog. You did a great job with the bag. I have been wanting to do the same thing. I saw these super cute bags at this website that I would love to adapt for my one year old daughter. http://www.shoebuy.com/zebra-crossing-club-mini-backpack-buddies/239373/512068?cm_mmc=bizrate-_-none-_-none-_-none
    She has a G-tube and gets gravity feeds in the day and we use the pump at night while she is asleep. But soon she will be getting a G-J tube and we will have to go to continuous feeds for about 18 hours a day. And then we will need a backpack. I have never seen them for $80. The super minis that I saw were at least $100 and our insurance does not cover them. They consider it an accessory item not a necessity. That is because they don’t have a toddler that has to be on a feeding pump.

    When you made the hole for the tubing to come out the side did you sew any kind of reinforcement around it to keep it from fraying? And where did you get the buckle for the front- from another bag?

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    • Jennifer,
      The hole I just sliced with a really pointy blade (from scrapbooking supplies long forgotten)and was initially going to do a button-hole reinforcement but the material is so sturdy and doesn’t fray or stretch so I thought I would see how it holds up without that extra step. So far, so good. It hasn’t stretched a bit, nor torn from wiggling the tube end through repeatedly.

      As for the straps in the front, yes…I had another old backpack and I just cut them off of the unused one and had them stitched so that they were able to slide up and down along his chest. I am finding that when the bag is full it slouches (from the weight obviously) and I look to find that the chest strap is sliding up to nearly his neck. When it does this I think that maybe I should have had them stitched permanently. The problem is that his PEG placement seems really high on his stomach compared to photos of others that I have seen online. I do not know if the location is normal or if maybe it needed to be higher because of the surprise ulcer issue. Either way, when the ounces are gone from the pack I can lower the harness to a good position for the rest of his feed but the ideal location, for the harness, rests way too close to his tube. *sigh*

      Do the super-mini’s have front harness straps too? I initially wanted the front straps because I was certain that he would tear it off angrily without something to keep the pack on against his will. However, he has shown little resistance to it’s presence. I have found it helpful for staying on due to the natural motion and gravity that whirls around an active toddler. Without one I don’t know HOW it would stay on his back.

      Do you have any advice on concealing the lump that the PEG tube causes under his clothing? When I pin it, I pin fairly high on the tube and they told us to keep the end facing UP at all times? So I am limited on how I can maneuver it so that it is the most inconspicuous. I can use tape, with much better results, but his poor skin is so sensitive to any adhesive that if I leave it on for more than a few hours he gets red “marks” that stay red for over a week. He is looking so beat up from all of the adhesive redness. I feel awful for him.

      Nice “meeting” you tonight. If I ever come across the place that I saw the SuperMIni’s for 80.00 I will let you know. I will look around tomorrow. Maybe I can find where I was.

      Mindy

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  5. Mindy,
    Hi, thanks for all your feedback. I wanted to answer some of your questions. The super mini does have the front straps. They don’t slide like yours though. Having them slide sounds like a nice feature. I never know if I should put Abbey’s straps below or above her g-tube and I always watch to make sure it does not end up on top.

    I don’t have any ideas about how to conceal the PEG tube. FYI I never even noticed it in the picture until you told me about it. Abbey does not have a PEG tube. She has a Mic Key button. It sticks out also, but not much I suppose. She was able to go straight to a button because we asked her pediatric surgeon to do the procedure not the GI doctor. We have a wonderful ped surgeon that has been seeing her since before she was even born. She had a congenital lung mass that she had surgery to remove at age 5 mos..

    For skin irritation, I use two things. I love California Baby’s Calendula cream. It has worked wonders for redness and controlling granulation tissue. It works great for tape marks also. Before Abbey had the G-tube, she had a NG tube for 7 months. Her face became scarred from the constant ripping of tape off her sensitive and fair skin. For bathing her, we use California Baby’s Tea Tree Oil and Lavender shampoo and body wash. It has natural antifungal/antibiotic and soothing properities for her skin. Her G-tube site looks great since we have been bathing her with it. Even the surgeon was amazed at the difference.

    We were surprised the other day by our medical supply company saying that they had our super mini. They had told me it wasn’t covered but somehow we got one for free anyway…Thank you Lord Jesus! We started trying it out this week. She was very irritated by it and refused to move for a while. She wears it about an hour and a half each day (so far). She does not like it but eventually she starts crawling around.

    ~Jennifer

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  6. Pingback: A boy, a ball and a backpack. (a g-tube update of sorts) | Mooney=MC2

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