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. 

Special Needs Bike Trailer

Recently, we went to the beach and wanted to take Macayla on a bike ride, but the only way that would be possible is with a special needs bike trailer. They cost thousands of dollars and we could not spend that. Fortunately, Macayla's wheelchair is more like a stroller where the seat comes off of the base and is held on by two rails that it slides onto. I was able to get two additional rails from Palmetto Seating who supplied the chair for us. I picked up a regular bike trailer meant for carrying small kids with a capacity of 100 lbs. I took all of the fabric off of it and with some scrap lumber I had around the house, I made a platform that Macayla's seat could latch onto. I spent $85 on the bike trailer, $10 on a trifold lounge chair (I used the middle section of it for the platform) and another $15 in hardware. Her chair fit right on it and it worked great. It was not as hard to pull as I thought it might be. She enjoyed the ride and we have a piece of equipment that we can keep for just over $100 that would have cost us thousands otherwise. I think I can also make a platform for her seating system from her Zippie wheelchair that we keep as back-up. The great thing about the kid carrier trailers is that they have a ready made attachment to convert them into a stroller. So when we got somewhere, the trailer quickly disconnected from the bike and we simply attached a front dolly wheel to the trailer tongue. The trailer was made by In-Step which is a Schwinn product. This has been a pretty good success so far and with a few modifications, it could be even better.

Wheelchair Lift

We have a wheelchair lift and the process of shopping and deciding on a lift can be frustrating. We spoke with several providers and many were difficult to deal with. We finally went with Classic Coach in Spartanburg, SC because Joe there was great to work with and was a great listener. He is very familiar with different equipment options and is a good educator. When searching for a provider, it is good to find someone who has a hands-on familiarity with the different equipment and what is possible in different vehicle types.

In our case we found a 2000 Dodge Ram conversion van with the high roof. We wanted the ability to have Macayla sit in the middle section of the van behind the driver seat and still leave room to sit in the captains chair in the middle section on the passenger side. This meant we had to have a rear-entry lift. We have found this to be very helpful in parking as handicap parking is usually hard to find. With the rear entry we can park in a normal space and still unload. The drawback is packing for trips. The only open space in the van for packing is the rear section, but that impedes loading and unloading Macayla on long trips. We removed the original bench seat in the rear of the van, but Joe at Classic Coach installed a special, two-person fold-away seat in the rear section. It gives extra seating when necessary, but folds out of the way the rest of the time. 

We have a Braun Millennium Series lift that has a solid platform and folds up into the back door of the van (they are barn-door style). This is a fairly simple lift and has worked well. We have only had one problem with it when a hydraulic hose leaked. Other than that it has held up well for the last two years. A friend of ours has a side-entry lift that folds out of the way of the door after it folds up into position. It is nice because others can still access the van through the side door when the lift is stowed. Our lift blocks the entire rear door in the stowed position. However, our friend's lift is a bit more complicated and has had a few frustrating glitches with all of its safety features. They also must park somewhere that has enough space on the side of the van for loading and unloading. There are obvious trade-offs for different lifts and designs, but when you have a good provider who can help educate and brainstorm through the decision-making process. The Classic Coach website has some great pictures of different options and it has links to three major lift companies that are worth checking out. 

Apnea Monitor

Since Macayla started having grand mal seizures that stopped her breathing, we started using an apnea monitor. It measures heart and respiratory rates through two (sometimes three) leads that attach to Macayla's torso. If her rates go too high or low, it will alarm. So far, we have found that most of the alarms are false, but they are not too frequent as long as we hook her up correctly. The most frequent false alarm has been a "loose connection" when she manages to rub one of the leads off. There is a soft, velcro belt that goes around her chest where the leads are and that helps keep them in place. Macayla is still squirmy enough to rub the leads off. It has alarmed a couple of times for apnea and low heart rate, but nothing was wrong. Her heart rate drops during deep sleep sometimes and this morning a yawn set off the apnea alarm. 

Another option we considered was a pulse/ox monitor where the lead is attached to a finger, toe or even around the foot. It measures their pulse and oxygen saturation. If either gets out of range, it will alarm. Macayla moves her feet and hands too much for one of those to work at night, and we question if we could get a good reading on her considering the poor circulation in her hands and feet. Overall, we have been pleased and even relieved by the apnea monitor. It allows us to leave Macayla in her room knowing that if a seizure starts we will be aware of it. So far it has provided peace of mind and only a few false alarms.

Grand Mal Seizures - Need Help and Information

Macayla had three, maybe four, grand mal seizures recently. It was the first she has ever had. They all happened over a two hour period and we gave her Diastat (valium medication given rectally) and it stopped it. Macayla stopped breathing and turned gray. It was scary. But the Diastat worked exactly the way it should. In less than three minutes she was asleep and the seizures stopped. We have no experience with grand mals and Macayla is immobile so she doesn't seem to jerk as violently as I expected her too. Her eyes just started rolling in circles and her head slowly and rhythmically shook back and forth in the "no" gesture. Her chin moved up and down rhythmically and she stopped breathing. Her arms and legs twitched slightly. I want to learn more from those families that deal with grand mals all the time. I feel very unprepared for these types of seizures and it may be something you cannot prepare for. If anyone has anything to offer, please let us know. Thank you.

Doctors prepared us for the day that Macayla may have big seizures and die or that her airway would become too floppy to remain open and she would go into respiratory arrest. We have talked a lot about that, but nothing prepares you for the real thing. Macayla's grand mals could have been much more severe, but just the 45 seconds she stopped breathing each time was tough enough to watch. We have a DNR (Do Not Resuscitate order) on Macayla because our decision was not to repeatedly intubate and extubate when the end comes because once you start you still have to decide when to stop. Intubating does not change the progression of the disease or its outcome, so we decided we did not want to put Macayla through that repeatedly. However, watching her not being able to breathe was the hardest thing I've had to do and your first response is to call 911. End of life decisions are tough and following through with those decisions are even tougher, now matter which way a family decides to go. 

Decompression

We recently got a phone call from a family who was struggling with decompressing their child through the feeding tube. I would imagine that most families find little tricks that work best for their child, but in hopes it will help more people, I can share what works for us. We have found that most pediatric surgery offices do little to train their patients and their families with their new feeding tubes. So, with Macayla, we have worked with a Genie, a Bard Button, and now a Mic-Key button. Each has its own advantages. We love the Genie's design, but changing it is painful. The Bard Button was a leaking disaster for us but it is very flush to the skin. The Mic-Key is great because it can be changed out at home with little discomfort and the connectors lock on. There is also an extra port on the connector to push meds through without having to disconnect the feeding pump. It does stick up above the skin more than a Genie or Bard Button.

As far as decompression, we hook a longer connector to her (24 inch) with a 60 cc slip-tip syringe connected to it without its plunger. We lean her back in her chair or lay her back in the bed near the edge. Then we hold the syringe down below her to let gravity take over and draw everything out of the stomach. I do tilt the syringe over enough to help flow but not so much that fluids would spill out of it. Sometimes it helps to have a cup to pour excess in if necessary. However, we have always been advised by our doctors and nutritionist to never dump the fluids that come out because they are much needed electrolytes. We put all the fluids back in. The only exception to this is if we get a bunch of blood out. Typically, if the syringe is getting full and there seems to be more air, I will sit Macayla up and then let the fluid run back in. Then I will tilt her back again and once again lower the syringe down below her to decompress again. Letting the fluids run back in while she is sitting up seems to help reposition the air closer to the tube. We sometimes push on Macayla's stomach gently to assist the air out. We point the open end of the syringe away from us as Macayla has sneezed before during decompression and it turns the syringe into a mini-canon that fires stomach contents! Yeah, it's gross. We have found that Macayla needs to be decompressed before every feeding and sometimes between feedings.