Skip to main content

Home again and feeding pump drama

Yes, we're still alive and yes, we made it home safely. :) We packed up everything of ours that we could find at my parents' house (probably left behind some socks & underwear) and headed for the airport. It was a long and miserable ride because we'd had to leave the rental at the dealership and cram everybody into her car that's not made for as many people as we needed to fit into it, but we survived. The people at the Boise airport were SO nice to us. The airline people didn't even ask me to open my medical supply bag to verify that it was medical supplies, which I appreciated since I'd had to cram everything in like a jigsaw puzzle & was afraid I wouldn't be able to get it all back in. :) They also issued my mom a gate pass so she could help me wrangle the troops to the gate. We could have done it without her help but it was nice to have her come with us and see us off at the gate. I also got to go potty all by myself and get a hamburger while she sat with the kids. It was lovely.
I was once again pleasantly surprised by the TSA employees at the Boise airport. Let's just say that pretty much all of the negative airport experiences we've ever had have been at the Boise airport. :) This time everything went really well though. They had us go through the little exit gate to get to the screening area instead of waiting in line, which was nice. I put the bags with liquids in the first bin to go through the machine, sent the kids through one by one, and then went to the table where the guy was examining the liquids while the kids picked up their backpacks. It was a really smooth process. Since we were on our way home this time, I didn't bring any unopened formula on board with us and that eliminated the need for a pat-down or opening any formula. This time, the TSA guy had me open one of Raya's med bottles and he did a vapor test on it where he held a little piece of paper over the bottle. Once that was cleared and he opened the backpack to look inside, he sent us on our way. The entire check-in and security process took less than 30 minutes.
Unfortunately, the US Airways employees at the gate were not very understanding or helpful at all. On our flight there from Phoenix, they had let us get in the plane first so we could clean our seats with Clorox wipes and get all settled in without being in anybody's way. This time, they made us wait until they had boarded all of the First Class passengers and all of the fancy-schmantsy preferred whatever members. By the time they finally let us get on the plane, there were about 15 rows of people that we had to go past. I get that these people pay extra money for whatever privileges they get but I think if I was them, I'd rather let the lady with 4 kids carrying several backpacks and a carseat get in the plane first than get whacked by whatever they're carrying and listen to the 2 year old freak out because Mommy won't let her help carry the carseat. We eventually found our seats, cloroxed everything, and sat down. This time the stewardesses didn't offer us water bottles like the nice ladies did on the first plane. This child was having a total meltdown from the time we walked into the airplane until about 15-20 minutes into the flight.
I thought she was going to need a barf bag while we were taking off & climbing. It's always SO bumpy above Boise! At the same time that she was melting down, her piece-O-crap feeding pump (which we had problems with all week) kept giving me ERR99 messages during her feed, which kept clearing out all the information in the pump. It's good that airplane windows don't open or it may have gotten chucked into the ol' Grand Canyon.

Finally, sweet relief came when she fell asleep after we got past the turbulence above Boise. A sleeping toddler is a beautiful thing, especially just after a meltdown.
Notice how she had wrestled one arm out of the carseat strap. It was a pretty big fit. I'm sure people on the plane weren't happy about the screaming toddler but lucky for everyone, nobody said anything or even dared to look at us. It wouldn't have been pretty. :)

I think the week of zero naps and lousy nights' sleep finally caught up with her and she slept until just before we landed. It was awesome. The other kids kept themselves entertained (or rather, their electronic devices kept them entertained) and I was able to jot some things down in my journal that I wanted to remember from the amazing week we had. When we landed, we again waited for everybody else to get off the plane and by the time we got to the baggage carousel, our two bags were the last ones on it and it wasn't moving anymore. That's how you know you're slow getting off the plane. :) By the time Donny came to get us, there was more than one child crying and everybody was at the end of their patience. It was definitely time to go home. And you know you're descending into Phoenix when you look out the window and watch the plane get swallowed up in the brown cloud :)

The first order of business when we got home was to take care of some ridiculous feeding pump drama. We've had a wonderful Zevex Enteralite Infinity pump for probably about 1 1/2 years now. We went through a few pumps in a short time before that for one quirk or another but this one has been fabulous and we've had no issues with it until recently. The problem was this. There are 2 little metal tubes inside the charger plug:
Recently, we noticed that one of them was sticking out a little. We kept pushing it back in and it wasn't a big deal because the pump still charged fine. Then 2 days before our trip, this happened:
The loose metal tube ripped out of the charger plug and got stuck on the pin inside the pump. Since we'd had the pump for such a long time and they're supposed to be serviced about once a year, I decided to just take the risk and trade it in for a new pump. I really didn't want to leave town and have a problem getting the pump to charge. Our home health company, who shall remain nameless but is affectionately known among many tubie families as "Crapria", sent out a different pump that afternoon. When the delivery guy came, we turned on the pump to make sure it worked and it immediately flashed "LOW BATT" and turned itself back off. Fabulous, thank you for delivering a pump with a dead battery. I signed the paperwork and he went out to his truck to leave. I plugged the pump in and while I was doing that, I opened the pump door. To my annoyance, the clear plastic inside the pump was covered in cracks:
I ran back to the door to see if the guy was still outside and he was, so I ran out and flagged him down. I showed him the cracks and told him that we would need a different pump. His reply was, "Well, the pumps are all tested before they're sent back out so it's probably fine and it's probably just cosmetic." I said that I understood that but that we were leaving town on Wednesday morning (this was Monday afternoon) and cosmetic or not, I wasn't willing to risk going on vacation with a pump that might crap out on us. He said he'd let his supervisor know and asked again when we were leaving, so I told him we were leaving early Wednesday so we would need a new pump delivered on Tuesday. They never showed up and I was busy getting everything ready to go, so by the time I realized they weren't coming, it was too late to call.
I was not happy about having to take a broken pump with us but we didn't really have a choice and it seemed to be working okay. At first. We had problems with it the whole week. The pump battery NEVER fully charged even after being plugged in all night long. The battery couldn't hold a charge for more than a few hours, which led to several feedings where Raya had to be plugged into the outlet for the whole feed:
She didn't appreciate that. (and on an unrelated note, why is Mary Lou Retton on the Wheaties box again? Have they run out of sports heroes?) I didn't appreciate it either because it was just one more thing to make her cranky and she did NOT need any help there.

In addition to the battery issues, we had a lot of ERR99 alarms. We've had other times where we had ERR99 and ERR63 alarms with the pump we had before, but it was always right when we turned on the pump so it wasn't as big of an issue. On the Zevex Infinity pump, the ERR63/99 or any other ERR_ _ alarms reset all of the settings on the pump and clear out the volume and total volume. When that happens just as you're turning on the pump, it's annoying but at least the only information you lose is the total volume for that day. With this pump though, we kept getting ERR99 alarms DURING feeds. That meant that the pump lost all the information about how much she had been fed during that feed and for the day. It was so frustrating!! I knew how much I had put in the pump that morning but it was impossible to know how much more she needed for that feed without dumping all the formula out of the pump and measuring it. It was RIDICULOUS. It happened TWICE during the same feed on more than one occasion. I was seriously ready to throw it at the wall. The problems got worse as the week went on and I know Raya missed out on some of her calories because of the pump errors. I'm glad she doesn't have another weight check or GI appointment until next month. We need a little time to get her back on track.

Anyway, I called the home health company and told them that the broken pump they'd brought us to replace our broken pump needed to be exchanged ASAP because it had caused us problems during our whole vacation just like I told their delivery driver it would. The nice customer service girl apologized for the inconvenience and they brought out a new pump around 6:00 that night. The battery on that pump was so dead that we had to plug it in to even get it to turn on. I asked the delivery driver (probably in a not-so-nice tone) if it was customary for them to deliver pumps with dead batteries as this was the second time in a week. He said that he wasn't sure about the Zevex pumps but that he knew they always had the Kangaroo Joey pumps plugged in. I really didn't care about the Kangaroo Joey pumps, I was just annoyed about getting ANOTHER dead pump, but luckily this one worked when it was plugged in and so far seems to be okay. 

I put sticky notes on the broken/problematic pump explaining what the problems were and that the pump was absolutely not fit for a patient on continuous feeds. I hope somebody paid attention to it. I'm planning on emailing the company to let them know that whatever their "testing" procedures are for pumps that are returned may not be good enough. If Raya had still been on continuous feeds and had gotten that pump to take on vacation with us, we would have ended up in the hospital or at the very least, she would have spent HOURS plugged into the wall and I would have had to wake up at all hours of the night to fix the ERR99 alarms and reprogram the settings every time it went off. It makes me angry just to think about it because it makes me wonder how many other people are miserable because of problems with faulty feeding pumps.

{Deep breath} Hopefully pump #3 will be the lucky one. We realized that a previous user had turned off the end of dose alarm so I need to refer back to the online pump manual again to remember the secret combination for how to turn that back on. I heard a rumor that the company that makes the Kangaroo Joey pump is coming out with a mini pump. That would make me so happy! (I think...)

To end on a positive note, we had 2 very good airport/airplane experiences and traveling with a tubie (i.e. getting through security with a tubie) was not as difficult or traumatic as I was afraid it might be. The end.


  1. We have had 3 pumps in the last 2 weeks from Crapria as well. I am going to call on Monday to get a new one because this one is squeaking when it turns. sUPER annoying! I am demanding a NEW pump this time not a refurbished one

  2. I HATE CRAPRIA TOO! Never heard that name, but I LOVE LOVE it. We've been waiting on neb cups and masks for over two weeks and they keep telling me they have not come in yet. In the mean time we have faulty neb cups not delivering medication and her lungs are suffering. I am calling lincare and/or rotech tomorrow.


Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …