Henry's Homemade Formula

Our journey towards adding "real" foods into Henry's Homemade Blended G-Tube Formula

A Comparison of Feeding Pumps: using a syringe instead

This is the 3rd post on my series on feeding Henry.  For the other posts, click here and here.  We’ve used both a feeding pump and syringe before, but keep going back to the pump.

At first we just didn’t know any other way – the hospital set us up with a pump and we just kept using it out of habit. With an ng-tube, it’s hard to do much else as the tube is so small. We did some gravity feeding in the hospital, but that wasn’t realistic for us long term. When Henry transitioned to commercial formulas he began throwing up so much we didn’t want to try anything new. After a few months on homemade formula, we began experimenting, but we found Henry seemed to tolerate the slow, steady pacing of the pump better. Each time I tried to use a syringe he would eventually begin throwing up. We did have a stretch of about 3-4 days when I used only a syringe and it worked moderately well. I would love to try a syringe again, as the pump often drives me crazy!

Pros:

  • I like the syringe because it seems to replicate “typical” eating more than a pump does. I like the rests in between of the food “pushes”, to get his tummy ready for eating by mouth.
  • I love the fact that he’s not “tied” to a tubing of a food bag, especially when he’s done sitting at the table and wants to get out. Then Shawn or I end up following him around with the bag and pump.
  • Less waste – no food bags to throw away and the plastic from the syringes can be recycled
  • Less energy from charging the pumps; and no need to remember to plug something in
  • Less noticeable and cumbersome; especially when we are out and about.

 

Cons:

  •  hard to push the food through, even after oiling the rubber part of the stopper.
  • I find it messier.  The syringe gets covered with food when “sucking” it up, and then I end up getting the food every where.
  • the small port opens and food flies everywhere (I hate this one!). I try to remember to hold it closed, but invariably I forget once.
  • Hard to do at night when Henry’s asleep – we feed him once at bedtime, and we struggle with the syringe in the dark.
  • I find it hard to do while he’s sitting in his chair at the table. The extension set isn’t long enough for me to get a good grip to push.
  • I also find I can get a thicker formula to go through the pump than I can when I’m using a syringe. For me to push the food through, I need to water it down more. This is still an issue as Henry doesn’t eat a huge volume. But we’re also not
  • as worried about this as we used to, as he’s gaining weight well and thriving in so many other ways.

 

So… for the time being, we continue using our Infinity blue feeding pump.  There may be a time when we can use a syringe more regularly… but for now we’re happy with what is working well.

Cheers Shelley

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Using Expressed Breastmilk with the Entralite Infinity pump, by Moog (formerly Zevex)

I’m going on a walk down memory lane for this post… harking back to when Henry ate exclusively expressed breastmilk (EBM), prior to his first birthday.  We were committed that even though Henry couldn’t breastfeed, I would continue pumping for as long as possible.  Our goal was exclusive breastmilk until age 1, or his nutritional requirements necessitated a change.

I had no idea at the time what a challenge this would be when using a feeding pump.  When we first brought Henry home from the hospital after he received his ng-tube at about 2 months of age, we had an older version rented Kangaroo model pump for several weeks until our funding provider provided our current pump.  The Kangaroo model seemed less sophisticated than our current Infinity pump, but upon reflection this was actually a bonus.  It would pump any liquid, at a predetermined rate, regardless of thickness.  The dose, rate & volume measurements were likely not that accurate, but at the time I didn’t know it.

About a month later, when we received our Infinity blue feeding pump, provided by our funding source.   I assumed that it would pump the EBM without problem.  The literature that came with it said was designed for use with commercial formulas, but the people I spoke with said it would pump any liquid.

Things did not go well from the beginning…

After having many headaches from error messages and clogged pumps, and many phone calls with technical service, it was determined that a likely cause was the EBM I was using.  I actually had one sales person tell me I should mix commercial formula in with the EBM to make the pump work better!  I was floored!  Here I was going stark raving mad pumping seemingly 24 hours a day to feed my baby, and here was a women telling me to use Similac!  Needless to say… I complained and she denied saying it.

All the sales representatives I spoke with said the pumps should work fine with any liquid… it was the technical service people who said right away that it was likely the EBM.  Human milk is unlike any commercial formula – the lipids (fat) within the milk “trick” the pump, clog the tubing, and resist flowing smoothly. The usual solution of letting the liquid rest a few minutes to reduce air bubbles doesn’t work because, by definition, you don’t want to let EBM rest – this is what allows the fat to separate and stick to the tubing.  For infants, especially little under weight ones… it’s this lovely fat that you want them to get – certainly not have it washing down the drain.

This was my first real experience of advocating on behalf of my son… and proving to myself that an exhausted, stressed out, medical mom can be a force to be reckoned with!  The sales supervisor I spoke with seemed to be under the impression I was a frazzled mom who didn’t know how to use the technology.  However after submitting my 4 page letter outlining every problem we had experienced over a 3 week period; copied to our funding provider – he quickly took notice.  I’ve included this letter at the end of the post… just for humour’s sake :).

It was at this point we were loaned the Infinity orange version.

The infinity “orange” pump has many of the same characteristics as the Infinity blue model I wrote about previously.  However this model was designed specifically for use for small volume feedings, such as in hospital NICU’s.  It has a lower maximum rate (300ml/hour) and comes with its own smaller volume food bags, although it can also be used with the larger bags designed for the Infinity blue.

The most important difference is the “human milk” option that can be selected.  While the Infinity blue has no option to select different liquids, the orange version allows the user to choose between commercial formula or human milk.  The human milk selector reduces the sensitivity of the error messages, allowing for the lipids within the milk to “clog” or “stick” together more than commercial formula would, without setting off a no-flow error.  For us… this was the big difference.

Having said that, the infinity orange was not a practical long-term option.  The maximum rate of 300 ml/hour meant that at age 5-6 month, Henry had just about outgrown the maximum rate already.  We would have had to slow down the rate at which we were feeding him, and for us, this was not an option.  30 minute meal times mimicked typical eating and this was always our long-term goal.

So… as nice as it was to have this option, we returned the Infinity orange.  In the meantime, our Infinity blue had been shipped to the technical service department in Ontario for servicing, and while we continued to consistently have errors as long as we used EBM, it was improved once the pump had been serviced (although I’m not sure why!).

 

Here’s my rather long-winded letter… what can I say – I was a sleep deprived, frustrated, stressed-out mama!  I’ve removed the names of the specific people involved.

Good Morning,

In follow up to our previous discussions regarding Henry’s EnteraLite Infinity Enteral Feeding Pump (manufactured by ZEVEX; commonly referred to as the Infinity Blue), I am pleased to provide this summary of the problems we have experienced and the information we have gathered regarding the use of this pump with breastmilk. As I indicated, Henry has an NG-Tube and is fed almost exclusively with this tube. We use only breastmilk (no formula) and are committed to continuing with exclusive breastmilk for as long as possible; up to his first birthday or until his nutritional requirements necessitate a change. However we have been experiencing increasing problems with our current pump, and in our search to resolve them, have discovered that the EnteraLite Infinity does not support the use of breastmilk.

When Henry’s NG-Tube was first inserted at BCCH (at approximately 6 weeks of age) we used the hospital’s Kangaroo pump, and continued with a Kangaroo Pet pump when we returned home. Upon acceptance by the At Home Program, we were sent the EnteraLite Infinity (blue) pump we currently use. As his volumes increased, we noticed that the pump’s dosage appeared inaccurate. The pump delivers more than the volume counter reads. For example, the pump is currently set to deliver 112 ml, however approximately 120-125 ml is actual given. At first we believed the inaccuracy was with our bottles and assumed the pump was correct. However after using several types of measuring devices (including the bottles used at BCCH), we concluded that our measurements were correct and the pump was inaccurate. To test this theory, I loaded the pump with tap water; set it to deliver into a bottle, and again it was inaccurate.

At the same time, we began getting “ERROR 63” messages during the pump’s initial self-check. The operation manual did not specify this particular error, only stating that the pump needed to be restarted and should the problem continue then technical support should be contacted. We also noticed that the alarm that sounds during the self-check had changed tones. Our overnight nurse also commented on this change and stated that the other family she worked with had that same pump and ours was now sounding different.

At this stage, I contacted ZEVEX customer support (1-800-970-2337). After speaking with several people we were told that the pumps were definitely accurate but that our problem may be with the breastmilk we were using as human milk can “play tricks” on the machine due to the lipids within the milk. They were unaware if the error message we received was associated with this or not and indicated that the Infinity Orange pump may be a better option. It was recommended we contact our provider for follow up.

Unaware of who our “provider” was, I contacted the At Home Program (888-613-3232); and was told that if a new pump was required then it could be arranged, but I needed to contact our NSS Coordinator. As Karen is on holidays, it is at this point I was put in touch with yourself. Following your advice, I contacted the Technical Service Department for Maquet-Dynamed, the distribution company for our pump (800-227-7215), and they recommended I speak with a Sales Representative regarding the various pumps available, our use of breastmilk and any correlation between this and the pump’s error messages.

I spoke with a Maquet-Dynamed Sales Representative, and she confirmed immediately that the pump is not designed to use breastmilk and this was the cause of our problems. After consulting with her colleague, she confirmed that none of their pumps will work with human milk – they are specifically designed to be used with enteral nutrition solutions. When I questioned why breastmilk couldn’t be used, she said it was because it was too “liquid”. The pump can’t measure the volume of something that “liquid” – it works with “solids”. Not being familiar with nutritional solutions, I asked about the term “solid” and she said that the pumps work best with a canned solution that is thicker than breastmilk. She indicated should we continue using breastmilk, we will experience increasing problems until eventually the pump will not work at all. Her recommendation is to switch to a nutritional solution and mix small amounts of breastmilk in with this solution (she also said that in her 6+ years with the company, no one had ever inquired about using the pump for exclusive breastmilk!)

We are firm in our commitment to continue feeding Henry breastmilk, even though he is unable to breastfeed. From my understanding, the Kangaroo Pet pump we originally used isbeing discontinued as the bags will no longer be produced next year. However as an interim solution for our specific case, perhaps we could obtain a second-hand one to use until either a different pump can be found that will work with breastmilk or until Henry’s nutritional needs change and we need to begin using a nutritional solution.

Over the past couple of months, I have come to understand that we are somewhat unusual in our commitment to use breastmilk and perhaps this is why the problems we are experiencing have taken people by surprise. Personally, I am quite astonished that there appears to be no pump available that supports the use of breastmilk and that the only recommendation from the company is to switch to formula!

Thank you so much for your help – I certainly appreciate your getting involved and helping us to find a solution for our problems. Should you have any questions or need further information, please do not hesitate to contact me. Please feel free to share this information as needed.

Thank you,

Shelley

Follow Up Notes:

06/08/10: email sent to At home Program

09/08/10: telephone conversation with At home program ; reviewed concerns; she assured other families were using BM with infinity blue pump; she will contact Maquet Dynamed to verify pump specifications

  • She indicated  (Maquet Dynamed Sales Rep) assured her that pump will work with liquids such as BM.
  • We are to contact (Maquet Dynamed Sevice Department 800-227-7215) to arrange for our pump to be serviced.

10/08/10: contacted Service Dept; new Infinity blue pump couriered

11/08/10: new pump arrived; experienced numerous “No Food” errors when milk was still in pump (more than original pump; no self check errors). “No Food” error is due to air in milk that “trips” sensor.

12/08/10: contacted Service Dept; she will consult with Clinical Department and factory.

  • Clinical Department indicated that Infinity blue is not designed for BM; the sensors are calibrated for feeding solutions; they recommended trying the Infinity orange since it can be set for either formula or human milk.
  • She will courier Infinity Orange to local Service Tech. He will personally deliver and check current pumps.
  • Contacted At Home program and provided update.

13/08/10: (Service Tech) delivers Infinity Orange; takes original Infinity Blue; leaves Infinity blue loaner pump.

  • Confirmed that self-check errors with original pump are due to (1) error 63: soft ware problem (2) error 99: battery problem
  • Says infinity blue bags can be used with infinity orange pump; reviewed how to remove air bubbles from bag and tubing; We can use both pumps for a few weeks to see which will work best for us.
  • Initially Infinity orange pump works great – no “No Food” errors at all; concern that pump rate only goes to 300 ml/hr – Henry will outgrow this rate quickly (as we feed him over a 30 min period).

14/08/10: continue to use both Infinity Blue and Orange; blue continues to have numerous “No Food” errors; changed pump once mid feed after many errors, continued with Orange pump error-free.

15/08/10: Infinity Orange has “Error 63: during initial self check; feed continues with no problems.

  • Next feed, pump does not display “No Food” when first section of tube is empty – continues pumping until entire tubing is empty and we have to manually stop pump or else it would have pumped air into Henry.

16/08/10: Infinity Orange continues to pump with large air bumbles going past the sensors.

18/08/10: Telephone conversation with Service Tech; can rate on Infinity orange be increased?

19/08/10: Shawn spoke with Service Tech – rate cannot be increased. We are to decide by Monday whether we want to keep blue or orange pump, until our original blue pump is returned (4-6 weeks)

20/08/10: Telephone conversation with At Home program

  • She had been contacted by someone from the NICU (I can’t remember the women’s title) at Childrens regarding the pumps; the NICU had been contacted by the lactation consultant we had been in contact with.
  • they were going to be placing an order shortly for some Infinity Blue pumps for training purposes and that they have now placed that order on hold until this issue can be resolved.
  • she is going to send another Infinity Blue – this time an older one from the Red Cross; there had been another family with issues – not with BM (their child is older and receiving a feeding formula) but they were getting the same “no food” errors continuously; when they received an older replacement pump their issues were resolved; if this is the same for us, then perhaps there is a general problem with these newer pumps that needs to be addressed

23/08/10:Service Dept – confirmed that rate cannot be adjusted on Infinity Orange pump. Orange is a newer model and, according to the factory, it was based on feedback from the blue pump that the breast milk setting was added. The factory informed her that the blue pump cannot be used to pump BM, although some women can successfully use it for that purpose.

  • Error 63 during self check with Infinity Orange.

24/08/10: Infinity Blue received from Red Cross. One “No Food” error on second use.

  • Error 63 during self check with Infinity Orange.

26/08/10: Error 63 during self check with Infinity Orange. (two times)

  • stopped using Infinity blue pumps due to Henry’s vomiting. Unknown if this is related to different pumps. Only using Infinity orange until problem resolved.

27/08/10: Error 63 during self check with Infinity Orange.

28/08/10: Error 63 during self check with Infinity Orange. (two times)

29/08/10: Error 63 during self check with Infinity Orange. (four times)

  • Pump did not display “No Food” when first section of tube is empty – continues pumping until entire tubing is empty and we have to manually stop pump or else it would have pumped air into Henry

30/08/10: Switched back to Infinity blue pump from Red Cross (first time using it since last Thursday); two “No Food” errors

31/08/10: Infinity blue from Red Cross: repeated “No Food” errors this morning – stopped using at at 7 errors and switched back to the Infinity Orange; finished feed with no further errors.

21/09/10: Have been using Infinity Blue almost exclusively as Henry has outgrown the rate capacity of the Infinity Orange. Blue pumps tends to work well, however “No Food” errors continue; usually workable however have switched back to Infinity Orange occasionally.

  • Infinity Orange has continual “Error 63” message; averaging 1 in 3 times used; has not displayed “No Food” error when it should have and continues pumping until entire tubing is empty and we have to manually stop the pump.
  • Telephone conversation with Service Dept: our original Infinity Blue pump is still at factory under repair; factory is doing an indepth analysis of problems. There may be a recall in the future once problem is rectified.
    • Informed her of our Infinity Orange concerns; she says that pump model is very new and the models they have at the office are not well used. She will forward concerns with the pump once it is received.
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Henry’s Orthotics

 

 

Henry’s been wearing orthotics inside his shoes since about January.  We knew for a few months prior to that he would likely need them, however were waiting for his walking to improve to see how his feet would respond.  His low tone results in his ankles and feet muscles not being strong enough to support his movement.  He has very flat feet, with his arches being so low that his inner ankle bone almost touches the floor when he walks.  His left foot & leg are weaker than the right, and his foot turns outwards when he walks.  The better he gets at walking, the harder it is for his feet to keep up!

So… after “waiting & seeing” for a while, the decision was made to get him some additional support.  This first set is an “over the counter” pair, known as SMO’s or Supra-Malleolar Orthosis.  Here’s a link for a detailed description of SMO’s: http://www.scheckandsiress.com/orthotic_care/SMO.pdf.

Essentially, as I understand it, these orthotics support the leg just above the ankle, helping to maintain a vertical position and supporting the arches of the foot.

Here’s a few photos of Henry’s orthotics:

They simply fit inside Henry’s shoes.  We put on the plastic inserts first, the slide his shoe on over top.  It is a bit of a pain in the butt, as it’s harder to get his shoes on and trying to push his shoes over the hard plastic destroys the back of the shoes.  We tried a shoehorn, but that only made it harder.

We ripped out the insoles of these shoes to improve the fit.

The upper fabric piece is to cushion the plastic against his legs.  But he developed a red mark almost right away from the plastic rubbing on the outside of his leg, so now we fold his socks down over the orthotic tops to provide extra cushion.

Here’s a photo of the two pieces separated.  We don’t usually take them apart, unless they get wet and need to be dried out.  The white part is slightly more flexible, although it doesn’t have a lot of give.  The blue part is very firm and allows for almost no movement.  These inserts use Velcro tabs to keep them in place.

 

These have worked very well for the past 4 months, and his walking is much better when he’s wearing them.  However as he is getting faster and faster, we’ve noticed that his left leg is again turning outwards and dragging behind.  As a result, we will now be getting a new pair of custom orthotics which will provide even more support. They will look similar to these, but will be custom fit to his feet.  I’ll post more about them once he’s wearing them.

It is likely that Henry will wear orthotics on and off for his entire childhood, and perhaps into adulthood.  As he grows, likely his bones will grow faster than his muscles can keep up.  We always allow time for his to play without his orthotics every day, as his foot and ankle muscles can’t strengthen when provided with so much support.  So it’s a matter of timing… enough time bare foot to give his muscles a workout, but not so much that it does damage or he gets tired and hurts himself.  We’ve noticed already that he falls more when not wearing his orthotics, and I think his ankles seem to turn in on him at times.

He actually quite likely his orthotics, and like lots of other things… they are just a natural part of our day.

Cheers, Shelley

 

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Easter Treasure Hunt

 

Happy (belated!) Easter!

This year for Easter I decided to create a little Easter treasure hunt for Henry & daddy to solve together.  It included a little note to start, with three “clues” each leading to an Easter egg treat, with the final clue leading to an Easter basket.

I was at a bit of a loss as to how to celebrate Easter, as so much of it is either religiously focused, or chocolate obsessed… neither which worked for us.  So I hit London Drugs and searched until I found something.

I can home with egg “stuffers” and decided to do a “tasting” hunt.  We’d done tastings with Amina, our occupational therapist, before when she wanted Henry to try something new.  That time we licked pieces of gum stuck to the end of a toothpick.  It was loads of fun and we played it up.  So… in the spirit of new things, we had a “tasting Easter Treasure Hunt”!

Here’s the initial letter & folded notes that were used as clues.  Each was a simple clue that he could easily solve with the help of daddy.

 

Here’s the egg stuffers that I used.  Each contained three things, one for each of us to try.  We tasted mint gum, chocolate balls and jelly beans.

 

 

 

Here’s the final basket.  I found some great plush bunny ears, perfect as Henry’s started “dressing up”… or dressing us up is more like it! (daddy has worn the ears more than anyone so far!).  Plus some egg bells that make great sound.

But it certainly was hard to find some non-junk food treats…

 

Here’s a couple of photos of Henry on the hunt…

 

Cheers, Shelley

 

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A Comparison of Feeding Pumps: the entralite Infinity “blue”

This is one of a series of posts describing the various feeding pumps we have used with Henry.  The information within is based solely on our own experiences and by no means should be considered exhaustive. We entered the world of feeding pumps when Henry received his first ng-tube at about 2 months of age.  For the past 2 years Henry’s pump has been a constant fixture in our lives… one that I simultaneously love and detest: love because technology allows my baby to eat; hate because at times it seems to control our lives more than enhance our lives.

We are like many other families, we had no input as to which feeding pump we received.  The At Home Program, our funding provider, provides one type of pump option for families – the Entralite Infinity Blue, by Moog (formerly Zevex).  However, we do have experience with a few other pumps from before we received this one, during our stays in the hospital and when we have been loaned other pumps for various reasons.

We’ve used both feeding pumps and syringes before, but keep going back to the pump. We now do bolus feeds over a 30 minute period, regardless of which method we use. We’ve been using our Zevex pump since the Summer of 2010, first with expressed breastmilk (for about 10 months while Henry had his ng-tube; until Feb 2011), then with commercial formulas (for about 3 months) and now with homemade formulas.

The following is my attempt at providing a description of the pro’s and con’s of each pump we have used.  I discuss two Infinity models, commonly referred to as the Infinity Blue and the Infinity Orange, a Kangaroo model and using a syringe instead of a pump.  Each post will provide a general description, as well as pro’s and con’s based on our experiences.  Please note… these are based on our experiences, mostly with expressed breastmilk and  homemade blended foods, and I have made absolutely no attempt to be unbiased!

So, let’s get started…

The Entralite Infinity Blue, by Moog (formerly Zevex)

Description

This is our current pump, and the one we have the most experience with.  The Infinity Blue is lightweight (weighing about one pound, not including any food), small and tough.  It can be dropped off the kitchen counter, banged on with a child’s hammer, and held under water and still keeps going!  It is programmable so can be used with continuous, bolus or intermittent feeding.  It can be programmed for the day, so users who eat by continuous feeds can wear it all day without having to reprogram (meaning a child could where it to school and not need to check the pump).  The variable rate and dose amounts mean it is compatible with both child and adult users.   The maximum rate is 600 ml per hour; it has a 24 hour battery and is supposed to be accurate within 5%.  The accompanied food bags, as call them, come in different volume sizes.

The Canadian distributor is Maquet-Dynamed, who provides both sales and service.  For in-depth specifications, see the company website: http://www.moog.com/products/medical-pump-systems/enteral-feeding-pumps/enteralite-infinity/

 Pros:

  • easy to carry and comes with a small backpack designed so the user can carry it with them.
    • The combined weight of the pump and food is still too much for Henry.  It pulls him back and puts too much strain on his back.  However in the future I can see this being a nice feature.
  • it can be operated at different orientations.  While many pumps must hang level, when the air is removed from the bag as directed, it can be placed in the backpack and operated while the child plays.
    • this isn’t all that useful with homemade formula due to it’s thickness.  Once the air has been removed, the food is so thick that we get “no flow in” errors.  However when we were using expressed breastmilk, we used this option a lot and found it worked very well.
  • its tough – in the past two years we have tried our best to break it and haven’t yet!  (aside from the lid once, which was under warranty)
  • steady pace.  We find Henry tolerates his food better when it is delivered at a steady pace, versus using a syringe where he gets larger amounts faster, with longer wait periods between.
  • Fully submersible under water; so very easy to clean.
  • fairly long tubing – this allows Henry to walk around and play while being fed. He will sit at the table with us for family meals, but often he’s done at the table before his food is finished, and this way he can move around.
    • this is nice for when it’s just us, but at times I find it very trying when well-meaning people comment that it’s like I’m “walking my dog”.  Not funny, actually.
  • The buttons are easy enough for Henry to push.  We went through a phase where he pushed them for fun (and he still does at times) but I count this as a pro as it gives him control over turning the machine off.  This was particularly important before he started talking, as he was able to turn it off then he needed a break.  The buttons are quite difficult to push, so a child with reduced fine motor skills would struggle with them.

 

Cons

  • Error Messages!  Error Message! Error Messages!  These are horrible enough it constituted a whole other post!
    • For a while I thought the errors were because we used expressed breastmilk and then homemade formula – but I have read enough other blogs to know this is not entirely the case.  Everyone experiences the horror of errors, regardless of the food being eaten.
    • I think perhaps when the pumps are being used at home this problem is exacerbated by exhaustion, stress and the sheer intimacy of the family dynamic.  Plus, unlike in a hospital… there are less places to run & hide!
  • The pump is pre-calibrated, meaning the end user should not have to worry about programming.  This is supposed to be a positive feature, but when using the pump for Homemade Blended foods it is a hindrance.
    • Because the pump cannot be calibrated, there is no way to account for the thicker formula and the dose function becomes worthless.
  • leaky bags – the manufacturer changed the bag design last year, and since then we’ve had between 30-40 bags start leaking.  I’m not sure if this is just a bad few batches, or if it’s indicative of a larger problem.  They begin leaking from the bottom, at the seal surrounding the tubing.  We haven’t had problems with the food leaking out, likely because it’s so thick, but often the water leaks out when we are cleaning.
    • the leaks usually don’t happen until we’ve been using the bag for a while.  The manufacturer indicates the bags should be changed every 24 hours, which is done in the hospital.  However at home most funding providers do not provide for this number of food bags.  Ours funds for 2 bags per week, and we often use each bag for even longer… up to a week or more.  With proper cleaning, the bags are fine for longer and this reduces the amount of waste we produce.
  • Maximum rate of 600 ml/hour.  This seems like a lot, however we will soon be maxing out this amount and Henry is only 2 years old.
    • We want to feed him over a 30 minute period, as this imitates eating by mouth; however as the amount he eats increases, the rate will not keep up. In the end we will either need to switch to using a syringe (which I’m not a huge fan of), or take longer than 30 minutes.  When we were at Sunny Hill last year we were roomed with a teenager who was fully g-tube fed.  It took him over 1 hour to eat, due to the limitations on the pump’s rate.
    • The 30 minute milestone is an important indicator for oral eating.  A child’s ability to take in and digest food this quickly is one of the ready-marks of being able to eat by mouth, so it is important for us to maintain this if possible.
  • the most horrible tone of the beep for the error messages… It’s enough to drive a person insane!!! My gosh, I hate it, I hate it, I hate it!  (recall… I said I would make no attempt at being unbiased!)
    • I know this may seem like a small thing, but I hear this beep countless times a day and it’s gets on my nerves so much.  If the manufacturers could change anything for at home use… a little jingle; song; or selectable ring tone would make my life so much more pleasant :).

 

In the end… our Zevex pump is an integral part of our lives and I’m glad we have it.  I’m glad technology has advanced to the point that Henry can eat through his tube at home, as not many years ago this wouldn’t have been possible.  I’m glad that Shawn & I have taken up the reigns, so to speak, and incorporated Henry’s g-tube into our lives… just as we would have anything else.  And I’m especially glad that his pump facilitates his wonderful homemade menu.

Henry wouldn’t be Henry without his tube… and we are so glad he has it!

 

Cheers, Shelley

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Henry’s types of vomit

I know… a discussion on vomit seems like a strange topic, especially since I haven’t posted in such a long time.  But I have been emailing back & forth with Stef, who commented on a post a while ago, and vomit has been a prominent topic!
It’s a classic case of… “if I knew then what I know now”…
As a result, I thought I’d spend a few moments explaining Henry’s various types of vomit. For us, Henry various types of vomit were due to different causes, and once we learned to identify the different types, we could work on solutions. 

Type 1: Thin & Immediately at the end of eating
Sometimes Henry would throw up near the end of feeding, or immediately afterward. He would puke once, maybe twice, then feel immediately better. It was usually quite thin and looked almost the same as what had just gone in. The OT used to tell us it was reflux from his tube, but I’m now certain it was simply because we were feeding him too much. We used to feed him what the dietician & hospital doctors said he “should “ have… which was way too much for him. Once we started recognizing his signs for being full, and starting feeding him less, this type of vomit went down. Not away altogether, but a lot less. Plus he kept gaining weight because the food that was going in, stayed in!
I had a real struggle with feeding him less than what the”experts” said he should have.  I had visions of him starving; back in the hospital; near death.  When he was first born there was such an emphasis on getting as much food into him as possible, that it was very hard for me to let this go.  Even after I saw the feeding him less was working, I would still panic; feed him a bit more and make him throw up.  Then, of course, the mama guilt would be in overdrive.  But eventually I learned that less is ok; and as he continued to do well I continued to be more confident in my ability to decide for myself how much he should have.  This was very much inline with my overall confidence in Shawn & I being the “experts” on Henry… specialists are the experts in their particular field… we are the experts on Henry.

Type 2: thick, often between meals or at the beginning the next meal

This was the vomit that I really didn’t like. Henry would sometimes throw up 1 hour or more after eating. Sometimes it was near the next meal or even just after the next meal had started.

It was very thick, and he would throw up several times; not feel any better; and remain unhappy for a long time afterwards. The vomit was thick and had a lot of phlegm in it. He would often choke on it and couldn’t get it out of his mouth. We would take a cloth and try to help wipe out his mouth.

This vomit was due to his allergies. He just wasn’t digesting certain foods and they would stay in his tummy until it got so full he would throw up. Because he wasn’t digesting it, there would be a lot of tummy acid in it, and it was very uncomfortable for him to throw up. Sometimes if I fed him something with a particular colour (like red beets) I could tell that when he threw up, what was coming up was his food from 3-4 hours ago.

For us, it was Dr Bratt, the Naturapathic doctor, who first suggested that this type of vomit may be due to allergies.  I already suspected that Henry may be allergic to something and had searched until I found someone who supported me, but it was Dr Bratt who identified this particular type of vomit as possibly from the allergies. 

If the allergy testing hadn’t provided any answers, her next suggestion was a stool sample analysis.   We never had to do this test, so I don’t know a lot about it, but apparently if someone is having a hard time digesting foods, doing a stool sample analysis will show what foods are being digested as well as they should be, and what foods are not being properly digested. 

Type 3: Thin, Between meals

Henry did have some good ol’ fashion reflux vomiting, but it was very little compared to the vomiting that resulted from the allergies. His reflux vomit was generally between meals and smaller amounts.  It would often happen when he’s be coughing a lot, pushing in attempt to fill his diaper or laying down.

His core muscles weren’t strong enough so when there was any pressure on him abdomen his muscles couldn’t keep the food down.  Having an ng-tube may have exacerbated this, as his tube stopped the muscles at the top of his tummy from closing all the way, so liquid would escape easier. 

There wasn’t much we could do about his coughing, other than to ensure we turned off his food if he was eating at the time.  Even then, he would usually throw up.  We eventually started adding some PEG to his food which helped the vomiting when filling his diaper.  When laying down, we used a crib wedge to raise his head up a bit when sleeping and this seemed to help.

This type of vomit seemed to resolve itself as he got stronger. Once he was starting to sit up supported and his core muscles started to work, we noticed this got better. 

Type 4: Colds & flu

Now at just over 2 years old… Henry barely ever throw up. Any time he gets a cold, the first sign is often throwing up. I think he’ll always have a sensitive tummy. Even this is very infrequent now.  I think he’s thrown up once, maybe twice in the past several months.
There are definitely foods that he’s not “allergic” too, but that are harder to digest: beets, tomatoes (ok for one day, but not too many in a row), brussels sprouts, melons. Now… whether he’s actually allergic to them or not, I’m not sure. Foods won’t show up on the allergy test if a person’s never been exposed to them. So perhaps he is, maybe he’s not… I just don’t include them and it works out fine.
Shawn & I were just chatting about how different our lives are now compared to one year ago.  This time last year we were still trying various commercial formulas, Henry was throwing up constantly, and our lives were ruled by his stomach.  Now… sure… eating is still a bit different in our home.  But Henry eats lots of the same foods other toddlers do, he loves helping make dinner and we all sit down to dinner together at the table. 
What a difference a year can make!
Cheers, Shelley
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