Kangaroo Joey

We tried using a new feeding pump, the Kangaroo Joey, for a month. It certainly has some nice features and I like its user interface and options. It alarms when the feeding is done and the alarm's volume is adjustable. It seems to have more accurate measurements marked on the feed bags than the Zevex Infinity system. It has multiple advantages, but it was not a good fit for us.

We use Elecare formula and it is a powder that has to be mixed. Apparently, powder formulas do not operate well in the Kangaroo system because it has a back-flow prevention valve that is pretty sensitive. The company who makes the Kangaroo stated we would have to blend the formula if we did not want there to be any problems. We noticed however, the post that turns the back-flow prevention valve on the feed set would get out of alignment and make it difficult to insert the set into the machine. We would notice this mainly when the tab on the set would not be centered in its corresponding hole on the pump door. The tab would actually be resting against the outer edge of that hole and would push back once the pump started. Then this would pop the door open and the pump would fail to function. We traded the pump out twice and never could figure out why this kept happening. Our best guess is that something was not quite right with the feed sets.

There are a lot of features we like about this system, but we did not find it to be reliable. We also noticed that the volume it dispensed was inaccurate. It would indicate it had delivered 250 ml of formula but we could tell less had been given. We actually measure our formula with a scale to ensure the volumes are correct. What we mixed and what the pump gave often varied by quite a bit. So, we have gone back to the Zevex pump and are dealing with the issues it presents. But it seems to be more accurate and is not as sensitive to mixed formula.

Kangaroo Joey vs. Zevex Infinity

We have switch feeding pumps from the Zevex Infinity to the Kangaroo Joey. Like anything there are pros and cons to either system. But so far, I prefer the screen and interface of the Joey over the Infinity. Without having to change screens, you can view where you are in a feeding. It doesn't seem to be as finicky once it is loaded and running. The Zevex can alarm often if the bag's set is not loaded perfectly or if one sensor is not happy about its readings. The alarming can be frustrating and hard to diagnose. However, actually loading the Joey has proven to be a bit troublesome. There is a back flow prevention valve in the tubing that has to be set in all the way for it to operate properly. Sometimes you have to push it in quite forcibly to make sure it is seated. The good thing is you know immediately if it is not seated correctly because the door on the pump will not stay closed if it is wrong. I also like how the feed bag is similar to an IV bag and more accurately shows the amount of formula inside. The Zevex feed bags, at least the 500 ml bags, were not accurate in their markings. The Joey also has a faster priming function.

The Zevex does have the advantage in portability and positioning. The Joey requires six inches of fall between the bag and the pump, where as the Infinity can be position any where as long as all the air is out of the bag. The Infinity pump is flatter than the Joey and fits well in most places. The Joey is more cube-like. With Macayla being less mobile these days, we do not have to have these benefits of the Infinity, but for active children, the Infinity is great. The Infinity's door has problems with the latch breaking, but I heard the company is trying some other types of plastics to fix this.

The Joey is new to us and we are waiting on a backpack for it and after we have had more time to learn it, I will post more if needed on troubleshooting.

Versed

We recently tried to control Macayla's grand mal seizures with Versed. Versed (ver - said) is often used in anesthesia and we get it in small, one mL vials. It is med meant to be given via injection, but this would take too long to have impact in the midst of seizures. Therefore, we give it to her buccally meaning between the cheek and gum without a needle. We use a vial cannula to draw up the med and then squeeze a few drops at a time between her cheek and gum. After we put a drop in, we massage that area of her mouth to help it absorb. Then we put the next drop in another place. Macayla's swallowing is impaired and even the single milliliter causes her to choke. We even suction her before we put it in. Within about a minute, we get the entire mL in.

We have tried Versed because she has built a tolerance against Diastat. Unfortunately, the Versed does not have much effect either. This past set of seizures started and I did not wait for a second one. I could see she was not finished, so I gave her Versed immediately after the first one. The second seizure was less severe and she didn't have any more after that. I'm not sure if the Versed was the difference or if she simply was not going to have as many seizures that time. The bonus for using versed is that it is easier to administer. Diastat is a rectal gel and obviously requires us to pull down Macayla's pants and diaper. Versed can be administered while she is in her chair, bed or otherwise. It is supposed to absorb directly into the gums which is faster (and less painful) than an IV or IM injection. We just wish it was more effective. Midazolam is the technical name and also marketed under the names Dormicum, Hypnovel, or Midacum.

DIY Beach Wheelchair

Going to the beach is a challenge with special needs. There are beach wheelchairs on the market and most of them will not work for a person with little or no tone to hold their torso or head in place. The real problem is the astronomical cost of these things. I'm not sure how their manufactures keep a clear conscience. I hope this entry encourages folks to make their own. Even if you spent $200-$300 in parts, it is cheaper than one you can get and it will be customized to your needs. I spent less than $130 by using what we had.

So, to overcome this, we made our own. Our local Family Connection office has a beach wheelchair we can borrow, but the seat is at a 90 degree angle which is not helpful for Macayla. Plus it has no lateral or head supports and she is too big for us to sit another type of seat on it. But we used the back wheels off of the chair for the chair we made. Below are some pictures and descriptions of what we did. I've tried to reference any websites for products that help with this. I made the frame out of PVC pipe and it held all 220 lbs. of me. I'm happy it held me, but sad I weigh that much! Anywho, It would be better if made out of furniture grade PVC and the better fittings you can get with it. Since I made the front wheels, I have discovered another way they can be done if you want to spend the money for it. This chair can be broken down for travel.

The beach chair fully assembled.

This was a lounge chair that worked for Macayla as far as angles and reclining ability. It has similar angles to her articulating bed at home. We bought this one at Big Lots for $48. The chair simply sits down in the frame I built. I used heavy zip ties to hold the chair in place, though it could be done with bolts or other ways. Of course the lounge chair folds up for travel.

The blue cover we found at Bed, Bath & Beyond for $20 minus the 20% off coupon. It is terry cloth and is meant to drape over a normal lounge chair. Below are some straps my mom sewed on to it so we could cinch the cover on the chair tightly at the head. This helped to keep the headrest in place (shown a few pictures below).

We created a lateral support system with a child's life vest. It had enough straps on it to strap securely to the chair and stay in place. I added a strap to hold it together around her torso like a big belt. This could also be accomplished easier with the lateral supports that can be ordered for bath chairs. We did not have the time to order any before our trip. Plus this saved us some money. The blue pillows were also bought at Bed, Bath & Beyond. They are designed for lounge chairs and have straps with clips to clip onto the chair. We strapped them onto the arms for extra comfort.

This is the other side of the lateral belt. It is a child's life vest that is worn like a sandwich board. The straps that normally wrap around the child's torso were used to strap the vest to the chair.

We used velcro to attach this hand towel to the life jacket so it would be more comfortable.

This is a close up of the headrest. We found some "hot tub" pillows at Bed, Bath and Beyond on clearance. They are vinyl-coated foam pillows with a weighted flange on them meant for someone to lean their head back on while sitting in a hot tub. We cut the flange off and used one on each side of Macayla's head to keep it in place. The blue lounge chair cover has pockets that hang off of each side to stow stuff. We cut two of the pockets off and they happened to be the right size for these pillows. We sewed the pockets in position and inserted the pillows. My mom utilized some ties from the cover and a button she found at Wal-mart to close the pockets and keep the pillows in. This really kept Macayla's head from flopping over to either side.

As one of the ways to make the chair more compact for travel, I used an old bike carrier for a car. I cut it so that I could slide the 1" PVC pipe over it and use self-tapping screws to hold the pipe onto the tubing of the bike carrier. The arms meant to hold the bikes became the arms that went back to my push handle for the chair. When the chair is disassembled, I can fold up the handle section in the same way the bike carrier folded up.

1" aluminum tubing (available at Lowe's or Home Depot) slides perfectly inside 1" PVC pipe. Here I bolted a PVC pipe to the frame and there is aluminum tubing inside it. The aluminum extends up and is exposed above the frame. The PVC from the bike-carrier handle then slides over the exposed aluminum tubing. I then used a pin from said hardware stores to lock the two together. So, bolts hold the pipe and tubing together and to the frame. A removable pin holds the handle's PVC and tubing together just above the frame.

These are the Roleez wheels we borrowed. There is another brand called Wheeleez as well. They slide perfectly onto the 1" aluminum tubing. Thus, my axel is one long piece of tubing that runs through the frame from one side to the other with enough excess on each side for these wheels. Removable pins keep them from coming off.

This is how the umbrella stays in place. I used a piece of PVC pipe that is screwed to the frame. When we used it on the beach, the pole stuck in the sand acted as a brake as well.

These are the front wheels I made for the chair. They are constructed out of PVC and swivel like normal dolly wheels. They also detach from the frame with removable pins to make packing easier. There are easier ways to accomplish this and there are now dolly versions of the Wheeleez wheels now that can be mounted . But they are not cheap. So, I made these.

This is the detached front wheel. The aluminum tubing inserts into the frame and gives the connection more strength. I found that a 1" coupling fits well into a 1 1/4" coupling or fitting and can spin freely. Using this, I was able to mesh 1" and 1 1/4" fittings to make the dollies spin 360 degrees. The tires here are pneumatic wheels made for hand trucks or garden wagons. I had to use a smaller 1/2" pipe for an axel that could fit inside PVC pipe. Thus, I used an elbow fitting that reduced from 1" to 1/2" at the wheel. This whole assembly should be reinforced with 1" aluminum tubing inside above the 45 degree elbow.

Overall, this chair worked well for us. Macayla really relaxed in it and even fell asleep in it every time we used it. It made it very easy to mover her around the beach.

Catheter System

This year, Macayla started struggling from time to time to empty her bladder on her own. We have had to use catheters often and had a system recommended to us that has been great. 

Rusch/MMG makes a self-contained catheter system that can be used by anyone. It is portable and has all that you need. It has Beta-dine swabs for sterilization, a small, fold-out chucks pad, gloves, and a bag with a self-contained catheter and lubricant.

There is a cap on the top of the bag that covers the tip of the catheter. There is lubricant inside the cap. Once it is removed, the catheter extends out of the bag and once it is done, it retracts back into the bag and the cap can be put back on. The bag can be torn open and emptied and

 then thrown away. We have found it to be a quick, simple and convenient system.

Zevex Feeding Pump Trouble Shooting II

The only other time I have had a problem with this feeding system, is when you load the bag full of food and the tubing is primed but every time I push the "Run/Pause" button, it tells me "No Flow Out" immediately. In other words, the pump did not even push any formula and it gave me this reading. I will double check the tubing to make sure it is not crimped. I manually push formula through and it flows fine, but the pump still says there is no flow out. This happened twice a month or so and if I changed bags, it solved the problem. However, that means a whole bag was wasted and our equipment provider is a stickler for only sending the order out when they can bill for it and not a day sooner.Then I discovered the culprit. If you look at the blue set that goes in the pump, you will notice how it is attached to the clear plastic.

Notice the blue nodules that insert up into the clear plastic on both sides. I discovered that if one of those is not fully seated, the pump will not function. It must be pushed up into the clear plastic as far as it can.

This little deviation in the blue tubing stops everything. But it is simple enough to fix and that means less feed bags lost.

Zevex Feeding Pump Trouble Shooting

Check out the first post below about this pump system. As I mentioned there, we have been happy with the system, but there are times when it fails or causes frustration. I invite any others who are familiar with this pump to add their experience here as well. Or let us know if you have used or seen a better system.

The latch on the pump door will weaken over time and break from normal use. It is part of the molded plastic door and is flexible, but within 8 months, it will begin to crack and break off. This is a problem since the pump will not operate unless the door is latched closed. Usually, the equipment provider can switch out the pump for you, but this takes time and feedings cannot stop while you wait for a replacement. The first sign of the cracking is when the latch feels looser than normal. Then, if you look closely, you will notice a hairline crack across the top of the latch.

We have found a couple of ways to deal with this. Before the latch piece actually breaks off, I will cut a strip off of an index card length wise and then fold it in half over and over until it is the right thickness to wedge under the latch. (see the next photo) It just has to be thick enough to firm up the latch so that it can still flex enough to work, but not flex as far as it was. By making it tighter, it gives more time before it actually will break off.

Once it does break off, the pump door will no longer stay closed and therefore not function. To remedy this, we have used the velcro strap inside the backpack (the larger one only) to strap the pump in place tight enough to hold the door closed. 

The straps in the mini backpack will not do this. The only problem is that the elastic in this strap will wear out over time and not hold the door as well. So, there is a small size bungee cord that works perfectly. As far as I know, it is the smallest one they make. After the set from the bag is installed over the wheel and the pump door is closed, this cord will hold the door closed tight enough for it to function.

These are just a couple of things we have done to make this system work while waiting on a replacement pump or just the replacement door for the pump. I have emailed the company about its design, but they have yet to respond. There is another couple of flow problems I will talk about in the next post.

Zevex Feeding Pump

Macayla has a Zevex Enteralite Infinity feeding pump. It is a good system and she has used it for over two years now. We have enjoyed its portability and adjustability. It can be carried in a specially designed backpack and does not rely on gravity to work. It can be attached to a pole for bedtime as well with the pole clamp that is included. We wanted to include a few posts on this pump and point out a few troubleshooting ideas we have learned over the last two years using this pump.

 First, many nurses may not be familiar with they system as it differs from most hospital pumps. It is compact so many of the buttons on it do two functions. For example, the Run/Pause button is one button used to start the pump and stop the pump. The Vol/Total button is pressed once to show the current volume and if it is pressed again it will show the Total volume for the day. If you press the this button once and show the current volume and press the Clear button, it will only clear out the current volume and not the Total Volume. Since our daughter has struggled at various times to tolerate food, it has helped to be able to keep track of the Total volume throughout the day and only clear it before starting the next day's feeding. 

Basically the pump works like this:

Each bag (available in 500 ml or 1200 ml sizes) have a specially designed set that fits over the pump wheel. The door then shuts over it and must be closed in order for it to work. Then it is a matter of turning it on, setting the rate and dose and getting it started. There is a catheter tip (cone shaped) on the end of the tubing that fits into feeding tube connectors. So, it will mesh with most feeding tubes. The gray rectangle in the photo is the screen that indicates all the settings.

 

The pump has a Prime button on it, so you can fill the bag, install the set over the pump wheel, close the door and then press and hold the Prime button. It will push formula all the way through the tubing. But there is a faster way to do this. If you will notice in these photos there is a "longer" side to the set. On that longer side, you will see a teardrop shape on the blue tubing. It indicates the spot that must be pressed in order for the formula to flow through. There is a small stem inside the tubing and when it is pressed down or over, it allows formula to flow. 

I use my thumb and push the teardrop section of the blue tubing while holding the filled bag. With pressure on the bag and gentle pressure on the blue tubing, the formula will flow quickly to prime the rest of the tubing. If you hold the bag upside down and allow all of the air to reach the tubing first, then there will be no air left in the bag and it won't matter if the bag is upside down, sideways or any other direction. Gravity will not be needed to keep the formula flowing. 

Overall, a good system. However, it takes a little practice to prime the tube by hand. Sometimes those sets (the blue tubing portion) fail and cause the pump to not work. I'll deal with that in the next post.