Thursday, November 20, 2008

Update, Nestle Compleat and Kangaroo ePump Reviews

I wanted to apologize for the delay in posting. I'll be writing a new post this weekend on Dear Son's recent 17th birthday. I haven't had a lot of time lately and I appreciate all of the visits to my site to check for new posts.

Things are getting more challenging in terms of caring for Dear Son. Not only does he continue to grow but as he gets more complex, the daily tasks seem to be taking their toll on me. None of the tasks by themselves are that difficult, but being on 24/7 can be tough without much sleep. He seems to be getting taller and heavier every day. While his waist/pant size has remained the same for the last year, his shoulders are getting much broader and he is outgrowing all of his shirts. I am buying him XL shirts and and they are no longer enormous but look to be about the right size. (Gasp!) The added size is exhausting me in terms of caring for him. On the weekends, when he is not in school, it takes a lot of energy just to care for him whether it's transitioning him from the rocker to the glider chair, changing his diaper or simply rolling him over and lifting his hips. I do love caring for him though and he is and will always be the best part of my day and the best part of my life. I am enormously blessed to be his mother.

The feeding pump issues I experienced with the new Kangaroo ePump have been resolved. A few weeks ago, Dear Son got the new pump and the pump was failing to pull the formula down the tubing. The problem was twofold. Dear Son's new formula, Nestle Compleat, which I absolutely love, is made from real food and is much thicker than his prior formula, Pedia Sure Enteral with fiber. As a result, the ePump could not pull the formula down the tubing after the initial use of the feeding bag. I solved this issue by putting 60 cc of water in the bag and starting the pump. The pump was able to pull the water through the tubing easier and once I got the pump running, I could add the formula.

The second problem with the ePump had to do with the feeding bags. There is a piece on the bags that should rotate so the bag snaps into place allowing the mechanism to rotate thereby pulling the formula through the bag. Once the bag is refrigerated (You are allotted one bag per day and you refrigerate the bag between meals.), the piece on the bag gets stuck and will not rotate. Since it won't rotate, it fails to lock into place and no formula gets pulled through the bag. Dear Son's Dad resolved that issue with a screwdriver. You can manually turn the piece to line it up and then when you place it into the ePump, it falls into place and the mechanism will rotate freely. So while it is a pain to pull out the screwdriver at every meal to resolve this, it does work.

Ironically, the home health vendor was not able to resolve the problems and I got a replacement pump before we were able to resolve the issues on our own. Secondly, I sent an e-mail to Kangaroo and they were not helpful. Their only suggestion was not removing the bag from the ePump. I explained that was not an option since 1) bacteria could grow if the bag is left out all day and 2) the bag needed to be removed so I could send the pump to school. I also stated that they needed to re-visit the ePump since it should be able to pull the formula down through the bag and that the bag should not have these issues. Kangaroo never bothered to respond. Parents should not have this much difficulty in light of the other issues we experience.

Some weeks later, our home health vendor had a delay in shipping the Nestle Compleat and I had to use to old formula, PediaSure. It was extremely thin and ran down through the bag. I guess since the Nestle Compleat is much thicker and made from real food, it presents a larger challenge. I can't imagine children would feel full on a formula that is as thin as water either.

Regarding the Nestle Compleat formula, I can't say enough good things about it. Dear Son changed formula a few weeks back. I began working with a new GI nutritionist as a major children's hospital. Dear Son needed to transition to an adult formula and I asked if there was a "natural" formula. She recommened Nestle Compleat, a blenderized formula made from "real food". It contains carrots, chicken, tomatos, peas and cranberry juice along with BeneFiber. This formula is much thicker than his previous formula, smells great and he seems to be more satisfied and not as hungry as the previous formula. In addition, it seems much easier on his system. Dear Son has motility issues related to his gene mutation and the Nestle Compleat has drastically improved his bowel movements. Previously, he might go three or four days without a bowel movement and then have a few on one day. This is not uncommon from what I have learned from other special needs children. With the Nestle Compleat formula, Dear Son has one bowel movement every day and sometimes two. If he has two then he may skip a day but he is much more regular. Although I have not been able to reduce or eliminate his Miralax (he gets one tbsp. per day), this seems much better. I should also mention that this formula has more protein in it and that meets his needs better.

The only downside to the Nestle Complet is the size of the cans. Previously, his other formula came in 8 oz. cans. This formula, comes in 8.25 oz cans which is a little more work for me. Before, I gave Dear Son two cans at each meal. With the new size, I give 1.5 cans for breakfast, 2 cans for lunch, 2 cans less 60 cc for dinner and then the final 60 cc at midnight. This is a bit of a pain on top of giving 12 meds four times a day, tracking bowel movements, taking care of Dear Son and running a business.

The new ePump, despite it's faults above, has given me one major benefit. I can set up the empty bag in the ePump at midnight so it's ready to go in the morning. I have to start the feeding at 4:15 a.m. so it's done by 6:30 a.m. so he can get ready for school. Having the bag set up allows me to hit just a few buttons in the morning and then I can get back to bed. This is important since I give his last meds at midnight and I am often up a few times in between. Also, the fact that he is getting less formula for breakfast (he gets water in addition to the formula at each meal) means that I can get up at 4:15 a.m. to get the ePump started versus 3:30 a.m. with the PediaSure. Honestly, I could never get up at 3:30 a.m. and was always behind the eight ball in the morning getting the formula ready. Now, I can honestly say that I am up for 4:15 a.m. feeds almost 100% of the time.

In terms of Dear Son, he seems to be having more seizures again. Not only that, but he is choking a lot more at night on his saliva, despite wearing the Scopalamine patch (it reduces choking since it dries up his secretions). I am very concerned about this because I am worried he will choke on his secretions and it also raises the possibility that we may need to revisit surgical removal of his saliva glands. In the interim, I have contacted the neurologist and I'll get some blood levels tomorrow for Dear Son and we will go from there.

Physically, he continues to decline, at least in terms of sitting. He can not support himself and falls repeatedly to the right side. I got him a new living room chair for his birthday and while that supports him better, he looked terrible in the pictures I took of him since he can not sit up straight. I was so excited about the pictures and then disappointed when I saw them. He can't take a nice picture when he slouches in the chair.

On the plus side, he is working extremely hard at school attempting to use his hands and arms. His teacher has done a wonderful job of incorporating fun tasks that require him to use his hands throughout the day. I went to school recently to learn how he has been doing some of these tasks. It was quite amazing. He is now able to move his fingers slightly to water the plants. His teacher has a special water bottle that she places in his hands. His hand goes on the top, one of hers goes on the bottom and her other hand goes under his elbow. When she feels the movement of his tendons, she squeezes the bottom of the water bottle so he gets the "reward" component for moving his fingers ever so slightly. Dear Son is so proud of this. And I am proud of him.

In terms of myself, I have been busy caring for Dear Son and been more exhausted than normal from a lack of sleep. I have also been busy painting my living room, foyer and dining room. Although I live in an apartment, I decided I needed to repaint the walls to freshen them up. I sanded them lightly, washed them all, applied painter's tape and then painted them all. Once that was done, I decided to paint over the green accent wall in the dining room. I painted it the same color as the rest of the room and I really don't like it. It looks very boring and dull now. Althought I not normally a fan of accent walls, it allowed me to have some color in an apartment without having to paint all of the walls back to a neutral color when I move. I will probably choose a new color in January and re-paint again.

I also hope to show you a new project that I completed recently. I had a new client with a beautiful new home that wanted to spruce it up a bit. So in this case, instead of staging to sell her house, I staged it to live. She allotted a budget for some new furniture however I was able to transform a few rooms using existing furniture. Her living room went from empty to "amazing". You won't believe the transformation! I have some before photos showing the placement of the furniture and accessories in the other rooms and then you'll see the after photos using her existing stuff. In four hours, I'll show you how some small changes made for some exciting results.

I'll try to post a story this weekend. In addition, I have been asked to complete an blogger interview. I'll share that with you once it's complete.

As always, thank you for your interest in Dear Son. I appreciate your interest and always enjoy reading the wonderful comments.

P.S. Reuters picked up one of our blog postings recently. Yay!


Poppy Q said...

Hi Dream team, you know we have been checking up on you. You have been busy, glad to hear you got a good job and don't know how you find any time to DIY at your own place.

Dear son is 17 now? Wow no wonder that son of yours is still growing.

Is there anyway that you can be provided with more support? It would seem only reasonable that you could be provided with overnight help for at least one night a week to give you a break. Being a caregiver is such hard work and you must be exhausted.

If we lived closer we would come and help you out, and give you a nights rest.

You truly are an angel dream mom.

The Microblogologist said...

Can you maybe prop him up a bit in the chair? He is a handsome young man, definitely looking more and more like a man and not a boy! If I didn't live so far away and my place was accessible I would totally let him water my plants =). It is so wonderful that they have found something he can do and enjoys so much!

Anonymous said...

Sounds like you could benefit from a few visits with a physical therapist - in your home - transfer training at least.

Equipment exists for transferring adults. Consider exploring both these ideas. Barbara

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