caseybarnes.org

for Casey...

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v2.0 (May 2010)

Casey

Reviews

Over the past 4 years we have used a lot of equipment and tools. A lot of these items we had never heard of before having Casey. Some of the equipment has been great, some has not. In this section we will lay out the good and bad. We hope that other parents out there may find this useful.

Image indicates and item that is typically covered partially or completely by insurance/Medicaid.

Name	SP Medical MSUA-01
Cost	$180
Pros	Standard parts, fairly quiet
Cons	Stationary, open design
Notes	We use this for Casey's night suction. It is a little quieter which is nice for sleeping. The unit is all open and sometimes when you go to suction the tube can pull the canister out of the bay. It still works, just gets tangled up easily.

Name	Devilbiss
Cost	$350
Pros	Widely carried in the US, standard parts, durable
Cons	Very loud, heavy, poorly designed pressure control
Notes	The DeVilBiss is very reliable. It is heavy and loud, but does work well. If you do not have to suction often this is a great unit.

Name	Suction Catheter
Cost	$1/each
Pros	Depth guide, thumb control
Cons	Stiff, hard plastic
Notes	This was all we knew for the first year or so. We had to deep suction many times a day. These did the job, but often left Casey's throat raw and sometimes bloody. If you do not have to suction often these work great. Pr if you have a Latex allergy this is the way to go.

Name	Yankauer
Cost	$47.50/case of 50
Pros	Available
Cons	No thumb control, hard, claw like tip
Notes	If we did not suction often this would not be too bad. We suction a lot, and way deep in Casey's mouth/throat. This tip does not bend at all. We have never used this at home. We have tried it a few times in the hospital. This is not the tip for us.

Name	Mic-Key GTube
Cost	$300
Pros	Low profile, available, easy to use
Cons	Leaks are common
Notes	We have found that if the extension is turned the wrong way (over the lock) that from that point forward the port leaks a lot. If you can keep the extension from being rolled over you can usually prevent the tube from leaking. We deal with a very leaky stoma more than the tube itself. I like the low profile. It is easy to change out when needed.

Name	AMT Mini GTube
Cost	$200
Pros	Low profile
Cons	Not readily available, poor extension design
Notes	This tube is very much like the Mic-Key. The main difference is the way the balloon sits against the stomach. We tried this as one option when Casey's stoma started leaking. We actually found for us that it was worse. If you have a leaky site it is worth it to try this option. We found that the extensions for this model where really thick, and hard to get into the port. Once it was in it was fine, but getting it in (and out) was difficult. We may have had a bad tube.

Name	Foley Catheter GTube
Cost	$1-10 each
Pros	Available
Cons	Hangs out of stomach (can get caught on stuff), requires a lot of taping and dressing to keep in place
Notes	This is what we started with. We had to redress it every few days. The taping and dressing were awful! We tried this again recently to see if it would help Casey's leaky site. It did not help at all and was not worth the dressing trouble for us.

Name	Mic-Key GJ Tube
Cost
Pros	Dual ports, low profile
Cons	Required xray to place, j port easily clogs, positional
Notes	We have had to go to the GJ a few times. It has a purpose. When you can't feed into the Gtube/stomach and don't want a surgery then GJ is the way to go. However, the tube needs to stay put. The Gtubes turn and move a lot. This one can, but should not. If it moves to much you can put the J port right out of position. If the port clogs (which happens) you can not just take the tube out and clean it out. You instead have to go in and have it replaced. Cola can help with some clogs, but some clogs are just to thick. Also, if you take a lot of medications, be sure your GI goes over them with you. Many meds can not be absorbed in the jejunum

Name	Zevex Enteralite Infinity
Cost	$1500
Pros	Small, available, amazing battery, special back pack
Cons	requires special bags, easy to error, pole mount only
Notes	This unit is small and easy to use. However, if you press anything before the machine is fully up and ready it will give you errors. You will have to reboot to get the unit to respond at that point. The battery on this thing is AMAZING! I wish more products had batteries like this one.

Name	Kendall Kangaroo Joey
Cost	$1050
Pros	Choices in bags, lots of features, table top or pole mount option
Cons	Harder to carry around than the Zevex (bigger, heavier, no back pack)
Notes	We have only used this product in the hospital. There are a few really cool features we wish the Zevex had. My favorite feature is the auto prime. There is an option you can select that will prime the entire line of the bag with one push. I love that. I like that it can go on a table or pole too. Either of these pumps are good. Each have their negatives, but I would be happy with either of these.

Name	Nestle Nutren Jr.
Cost	$45/24 8 Ounce Can
Pros	Cans, easy on stomach
Cons	Cans, hard to find
Notes	I liked the cans because they are premixed- I know the concentration is accurate. I don't like the cans because we only give Casey 4 hours at a time (about half a can). The other half goes in a bottle in the fridge. Now we have to deal with warming the food at just the right time. Not a huge deal, just one more thing to do. The formula smells like cookie dough.

Name	Nestle Peptamen Jr.
Cost	$170/24 8 Ounce Can
Pros	Elemental, cans
Cons	Cans, very hard to find
Notes	This has the same can issues as the Nutren Jr. This formula is more elemental. It does not smell sweet any more, it smells more like baby food. It was a lot easier on Casey stomach. When we went to a GJ she had some absorbtion issues and an elemental formula became a must. This was the first one we tried.

Name	Nutramigen AA Lipil
Cost	$65/1 14.5 Ounce Powder
Pros	Elemental
Cons	Hard to find, smells awful
Notes	After trying the Peptamen for a while we needed something even more broken down. This was our answer. Casey does well on this formula. It smells awful, but she is absorbing what she needs now. This product is very hard to find.

Name	Split Gauze 2x2 (4x4 also available)
Cost	$220/case of 700
Pros	Disposable, available
Cons	Don't hold much, require tape to keep in place
Notes	These are great if you don't leak much. Casey leaks a lot. When we use this option we are changing them out every hour or 2. You have to tape them closed each time then deal with cutting or ripping the tape to remove them. We do still use these some. We use them in the pool. We also carry these with us so if we have to change her dressing while we are out she wears these.

Name	Silver Nitrate
Cost	$20/per 100
Pros	Works well with granulation tissue
Cons	Can easily harm healthy skin
Notes	We use this product when Casey has granulation tissue around her stoma. We cover the surrounding healthy skin with Vaseline or bacitracin to prevent the Nitrate from harming it. Casey sometimes gets irritated around her stoma (not granulation tissue). This product is not good for non-granulation tissue.

Name	Steroid Creams
Cost	$4/per ounce
Pros	Helps heal
Cons	Allergies
Notes	We have tried this product twice. The first time I noticed that Casey's site looked worse. However there were a lot of things going on at that time so I was not sure what caused it. The second time we tried it I noticed the same thing. The second time it was the only thing going on. We do not use this product anymore. Casey is allergic to it. Instead of healing it inflames and angers Casey's stoma site.

Name	Curity
Cost	$69/per 176 diapers (.39 each)
Pros	Available
Cons	Plasticy, leaky
Notes	I HATED Curity diapers. I tried so hard to make them work. They felt awful, so stiff. They did not fit Casey well at all. We had a lot of leaks while trying these out. Casey has both hips dislocated so we have to have full coverage on diapers. These were not the answer for us.

Name	Masimo Rad-8
Cost	$1250
Pros	Available, lots of settings
Cons	Large
Notes	When we got this unit we tried to set it up following the manuals instructions. We are pretty tech savvy. Neither of us could get the settings right. We ended up calling in for support. The way to do it is not at all as the manual indicates. Once we figured it out we do like the unit. You can connect to a computer and collect the data over time. This is kind of cool for trends and stuff. You can set the alarms very specifically as well. It is a cool unit, just plan on spending some time to learn it.

Name	Pari ProNeb Ultra II
Cost	$60-80
Pros	Quiet
Cons	Slow
Notes	I like the Pari because it is much quieter than other nebs. Over a short time it gets very slow. Casey gets Tobi every other 28 days. On this unit it takes way to long to give Tobi. They have good 5 year warranties. I sent ours in when it got too slow last time and they did replace it. I had to get something else to use in the interim though.

Name	Respironics Inspiration
Cost	$35-50
Pros	Fast
Cons	Loud
Notes	We got one of these while our Pari was sent in. This unit is so fast! I use it as a primary now. We have the Pari that we can use if we need it, but this one is so much faster. It is really loud though. When Casey gets nebs in bed (when she is sick) I use the Pari instead.

Name	Respironics BiPAP Plus
Cost	$1300
Pros	Quiet, heater
Cons	No controls, limited alarms
Notes	Casey can break the seal on the mask pretty easily. I wish that this unit would read out the leak. The only way I knew there was a leak I could not feel was the next morning if there was more water gone than usual. All of the settings are on a card and the user is not able to adjust them at all. I don't like having to have a tech come to the house if the doctor changes settings. I don't like having to take the unit to be read to see leak averages. If this unit would just let me see the leak I would be much happier.

Name	ResMed Quattro Full Face Mask
Cost	$176
Pros	Small
Cons	Clips are a little tricky, nose support is large
Notes	I did not like the clips on this model at all. They do have them, they are just not as easy to open and close as I would like. The mask was well made, and the straps are all soft and comfortable. This was as close as I could find to the mask from the hospital.

Name	Tiara Ruby Head/Chin Strap
Cost	$20
Pros	Soft, comfortable fabric
Cons	Hard to get on, no clips
Notes	When Casey was on BiPAP we had a problem with her chin. She would drop her chin back and down and pop right out of the mask. I spoke to a few places about getting a chin strap. The Tiara was said to be the smallest one out there. If I was wearing it myself it would be easy to just pull it over myhead. When putting it on Casey it would be nice if there were some clips to open it up and wrap around her instead. Once we finally did get everything in place it was too small for Casey. It was close. Maybe in a year or so she can wear it.

Name	AFO
Cost	N/A
Pros	Design/color options, custom made
Cons	Velcro gets messy over time, inner pads start to stink
Notes	Casey had foot surgery a while back. We started using AFO's after her casts came off. Casey wears them all night every night. They have done a good job so far. Her foot is staying in a good position and not droppping. I love all the designs available for boys and girls.

Name	Benik Hand Splint
Cost	$150-200
Pros	Custom fit, color options
Cons	Hot
Notes	Benik hand splints are good for a few reasons. They have lots of places they measure so that you get a good fit. They support the thumb and the wrist. We had a pair that also had hand paddles to support the fingers. The hand paddles made it so Casey could not use her hands at all. We did not like that design. The open finger/hand design is nice though. The fabric is hot and does not breath well. Casey can wear her gloves for about an hour or so before she gets hot.

Name	Custom Splints
Cost	N/A
Pros	Custom
Cons	Not a lot of colors
Notes	We had some custom splints made a few times for Casey. She had little blue ones in the NICU. Then recently we had some new ones made. They are designed to keep her fingers and thumb open, as well as her wrist straight. She can not use her hands while she wears these. These are good for when she is really stressed out and tight fisted. We got lucky on colors (purple). Usually it is blue or white.

Name	Kid Kart TLC
Cost	$2500-10000 (depending on options)
Pros	Fully customizable, forward or rear facing, lots of kid colors available
Cons	Horrible weather cover
Notes	We went with the Kid Kart for a few reasons. We needed Casey to face us. This was one of a few that offered that. In addition we needed full head and leg support. This unit has large wheels for a smooth ride. It can fold up some (not a lot). Overall we have been very happy with the chair. It has a nice table top you can slide on. We got a separate floor base for indoors. The floor base doesn't allow full tilt range but rather just a few tilt positions. Casey has never been comfortable in the floor base. My biggest complaint with the Kid Kart is the weather top. The visor attachment is sad. It is hard to get on, and just never sits right. As long as I don't have to deal with the weather visor I like this a lot.

Name	Leckey
Cost	$500
Pros	Soft seat, removable for cleaning, head and leg support, lots of colors
Cons	Hard to adjust
Notes	This unit is almost exactly the Snug Seat. The only difference is the adjustments. It is very difficult to release the joints on the Leckey. Once it is set up it is a great chair.