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Showing posts with label Reflux. Show all posts
Showing posts with label Reflux. Show all posts

Tuesday, April 06, 2021

2021 Check In/ Be In

 Hi Everyone,


We are still here and all vaccinated with Moderna. Because of Ellie our whole household and her carers were all able to get vaccinated. Dave and I are classified as "in home unpaid essential healthcare workers". Ain't that the truth! ;-)

I'm still worried about variants but not so freaked out about being within 3 feet of people while masked at the grocery store and not so freaked out when people walk by Ellie really close (we are obviously still masking while in public).  It is incredibly to read the news and see how many people are not really distancing in stores and to see the spring break events that might be super spreaders. Everyone is really fatigued by it all. Now that it's spring and the weather is a little warmer I do feel a life of energy. There's still not much to do, it's still very repetitive, but I'm trying to pull out of that fatigue.  Ellie's feeling it too. She's quick to cry and was just sick with some mystery virus - 102 fevers for 4 days with advil. She was tested and it wasn't covid but still hard. She's been tired. We worry about her iron levels and her diet.  I just found this great book: Dropping Acid by two doctors who researched reflux and the pepsin issues.  I have reflux too as it turns out - the lump in my throat that has been a constant for years and the hoarseness of my voice. My voice was so tired at the turn of the year my vocal cords would seize up. Not good as my job is teaching, coaching, consulting and all over zoom. Turns out the combo of 'silent' reflux, too much singing to Ellie in the months we  had no help, and all the zoom meetings contributed to vocal cord fatigue.  So I need to change my own diet AND I really needed to change Ellie's too.  Turns out the number one reflux food is chocolate and I had been giving her chocolate (avocado) based pudding every day. No wonder I have not been able to get her off the reflux meds! ughhhhhh.  The good news is avocado is a great food for refluxers. 

What I love about this book is that it's about controlling reflux with diet.  Have been revamping all her recipes and need to expand her diet anyway. It's an ongoing dance. 

This spring some of her favorites are:


Ellie's favorite hairdo - the big bun!
Obla di Obla da (especially the Gabriella Bee version)

Footloose by Kenny Loggins. We tried to watch the remake but it starts with a car crash - do not recommend. She liked the 1980's version better anyway - go 1980's - it's way less violent.

Ellie says that after the pandemic she wants to have a family reunion and go to Africa - specifically - Egypt! I'm so there...some day.  She also wants to go to her local coffee house again and do iPad club there. She misses the bustle of the place. 

She's still into dance parties and jam sessions. 

We are nearly done with all the Harry Potter books. 

She was doing virtual school for so long one of her favorite things to do was go visit her school at the weekend and look in the windows. She definitely struggles with the constraints of school (e.g., the schedule) but she certainly loves it just the same. 

Ellie at her school.
We started bullet journalling including 1 for Ellie for us to track her diet and care daily and she has a journal where she can recorde favorite questions, put photos in there of selfies with carers, and record her monthly top hits. A carer gave her this to track her hair styles too and Ellie really likes it. It's a way to give her choices too. We got her a little instant photo printer that she can use with her iphone. Oh - yes we got her an iPhone so she can keep in touch with her friends and family.  She likes doing selfies. 

That's the latest.  It's a hard time globally for everyone. Waayy harder for some than others. Everyone is under so much pressure. There's tension between those with privilege and those without and COVID deaths report that better than anything else. I am hopeful that coming out of this there will be social and environmental innovations that make the world a better place. 

Hope matters. Everyone is in their shadow - so compassion matters too.  

If there is anyone reading this - I am wishing you and your loved ones grace. Wish that for me too. I need all the help I can get. ;-)



Friday, January 31, 2014

Cha, Cha, Change! or Goodbye Feeding Tube!

Ellie having a lavender foot soak on her Winter Break
This last 6 months has been a time of intense change for us all and for the better. On October 22nd of 2013 Ellie got her g-tube OUT (for good if I can be so bold to say that)! AND on November 4th she started at a new school.

When Ellie was born our wonderful neonatologist Dynio said that Ellie will present her needs. That concept stuck with me.

Me and Ellie playing her Paper Jamz guitars
Ellie's g-tube was always a nightmare of leakage, skin breakdown, and intense management. It progressively started popping out more and more. I tried it all, taking it out for a little time (actually over night) to see if the track would shrink a bit. Taking her to the doctor to see if they could surgically make it less leaky. We are lucky to have a dear friend who is a wound care nurse par excellence so we have been able to manage her dressing at home and avoid the initial yeast and fungal infections that occurred when we were still in California (another benefit of having moved to Boston). But it was coming out more and more and we were changing our elaborate and expensive dressing on it several times a day. They had to do this in school too. And it was constantly leaking.

 In February (this time last year) it was popping out once a day and Ellie's physical revealed low vitamin D levels. I upped her vitamin D and other nutrients and in April got an appointment to see a GI doc to see if there was another type of G-tube that would work better. It had started popping out twice a day. And for those of you who have not lived that - it's awful. Ellie is in pain because stomach acid burns the exposed skin around the tube which was like an open wound all the time. And she loses whatever meal she just ate and you have to transfer her, lay her down, and clean and redress the site, insert a new g-tube (into her stomach) and get her washed and dressed in new clothes. The whole thing can take a good 30 - 40 minutes as you try to distract Ellie who wants to scratch her stoma area because acid on skin hurts and itches. Super fun. So when we went in April we saw a nurse first. She asked me to show her the site. I got Ellie onto the table and asked the nurse for some towels. She was surprised by this. But she got them. Me and the nurse I brought with me then proceeded. I cut off the dressing and my nurse positioned the towels to stanch the deluge of stomach fluids that would ensue after I took out the Mic-Key Button so the nurse could see the site.

When the GI nurse saw Ellie's stoma she shrieked (not exaggerating here), "OH MY GOD! OH MY GOD! It's a hole! It's an open wound! OH MY GOD!" I started to explain how hard we have worked to keep Ellie's skin clean and well cared for and that the tube leaked from the beginning and that we have had to limit Ellie's PT and body Jacket and every thing to protect the site. She kept saying Oh MY God! At which point I started to cry feeling very bad. She then said, "You guys have been going to heroic measures to care for this! The skin around her site is remarkable and perfect! But her site is a hole, there is no track." I said that I had thought so but that Ellie's old GI Dr. had not mentioned that during the last exam. She calmed down once I started crying and I calmed down too. The doctor came in at this point and we decided to try a different tube and see them once a week to follow it. Long story short we tried the tube and it worked a little better but not much.

 The whole incident with the nurse losing it was actually a wake up call for me.

We had been going to heroic measures. Me and Dave and Ellie's teachers and the carers we have helping us in the home. Our quality of life was very negatively impacted, Ellie's most of all by this. Ellie had been doing great taking sips of liquid from her amazing speech therapist Katie. AND she had been eating all her purees for several years now. I realized that maybe she was presenting something new to us. Presenting that it was time to get rid of this awful, painful wound.

I presented this idea to the head of GI at the hospital and he said that if we close up this site and then put another feeding tube in a different spot, there was no guarantee that her skin would not do the same thing. He later retracted that because I think for a doctor it's a huge risk to encourage a parent to get rid of their kid's feeding tube when they have a history like Ellie's.

However, Ellie was doing well with her drinking and a nutritionist had told me there were kids with no feeding tube who did not drink and were OK. Note this was not my goal - I want Ellie to drink. I knew that all the time we had spent changing her dressing and managing her site would now be spent on working with her to drink.

Nosey Cup
But isn't that time better spent? We spent over 12,000 hours getting her to be able to eat and her glowing skin, hair, and growth rate, alertness, and lack of colds (and normal elimination) is a testament to the goodness of having done that. Also, there are cups everywhere that you could make into a nosey cup by tearing or cutting it. There aren't g-tubes and Allyven pads, and Hy-tape everywhere or people who could even handle dealing with Ellie's site. My goal as her mother who loves her is that she be as independent as possible by the time I leave this world and that includes not being dependent on expensive medical supplies (if at all possible). Note, I am not knocking those supplies or the tube - they saved her life. BUT if there is a choice point that involves more work for me but provides an ultimate benefit for Ellie, I am going to go for it.

In the several months before the surgery we worked and worked on getting Ellie to drink. We all (school personnel and Dave and I and our home carers) used spoons and the nosey cups. We had enough experience with feeding Ellie that we knew what to do. It was an adjustment for all of us. Giving someone liquid in a cup is difficult enough. Now factor in someone who moves her head from side to side and has a slight oral aversion. We started by thickening apple juice with apple sauce. But because apples are so hard on the teeth I now give her other things to drink. One is her cantaloupe and coconut water juice I make her myself.

Ellie's Hydrating Cantaloupe Water Recipe:
  1. 1 cantaloupe
  2. 1 100 ml or more of coconut water
  3. 1 pinch sea salt
  4. 1 tablespoon of agave
Direction: Take 1 whole cantaloupe seeds and skin removed and blend it with one big carton of coconut water along with a pinch of sea salt and a tablespoon of agave (optional).

Ellie loves this and it's very hydrating and cantaloupe is easy on the teeth. I also give her my green juice too which she loves! I make Kris Carr's Make Juice Not War juice (Google it). The other thing is that Ellie eats purees all day - not dry crackers or cereals or dry anything. There is liquid in her meals. I do worry about her getting "free water" but for now she is hydrated. Though the doctors would have liked to see Ellie drinking 1,000 ml's of liquid a day, we did the operation when she was at about 300 cc's per day. Which is pretty good as we started at 0. A critical factor was that she would eat her meds that we mixed into her purees.

Ellie on New Year's Day 2014
On October 22 we had the operation. The surgeon told us we would be in only overnight but because he realized Ellie's shunt cables drain into her abdomen and because her site was so bad (the stomach lining was growing outward..!) he did some extra things to ensure closure and that her stomach contents would not leak into her abdomen compromising her shunt. We were in from Tuesday to Friday with Ellie on morphine and in a great deal of pain the whole time. Not fun. Poor Ellie. I remembered it was rough for her to get a tube and for my little girl, equally rough getting rid of one (which is so NOT the norm - typically they close on their own). I am not sure what her karma is in this life, but she has some extraordinarily challenges. Full recovery took about 2.5 months.

Today she is eating slightly less than she did with the tube (but not losing fluids and whole meals either).  She is drinking about 400-500 per day, and hydrated and moving her bowels much, much better, and her vitamin counts are all excellent. She was losing so many nutrients and calories every day right out of her tummy. Now she is keeping it all in. She still has reflux, but it's much better too. The green juice is still a huge factor in her being less acidic but she also isn't taking air in through her belly anymore. We were also able to get a body jacket (spinal orthosis) that actually works because we don't need a big hole in it to accommodate her G-tube.

Most of all, Ellie's quality of life is much, much better! She is in far, far less pain. She is able to concentrate much better without the constant itching and pain of the tube. For her 11th birthday she got her tummy back. Can you imagine how distracting having a feeding tube that hurts all the time was for her? I think about when I get a cut in my finger and how it can be slightly distracting when it's fresh. A leaky, painful feeding tube would be magnitudes worse. Every time I see her smooth yet scarred belly I have to kiss it. She had to be really brave to drink because liquid is really fast and scary to deal with if you are hypotonic and have dysphagia. Ellie works as hard as we work with her and the results have been worth it.

Sunday, July 14, 2013

Going Vegan = A Feminist Act...Who Knew?

By Ann Taintor
Who knew that me becoming a vegan was actually challenging societal gender norms?  I am bemused by the responses of some younger women and a few older women to me when they heard I have become vegan. They all said similar things along the lines of, "What is your husband going to eat?"  The body language that accompanies this question is a look of concern which leaves me wondering if what they are really asking is, "Will you have time to cook two meals?" And "Are you sure that's really wise in terms of caring for your family and keeping your husband happy?"

Receiving these questions just floored me - is it not 2013 versus 1813?


By Ann Taintor
My mother decided to be vegetarian when I was about 12 (at the same time I read Diet for a Small Planet and decided to become a vegan). What this meant for her however was cooking one meal for she and I and another meal for my father and two sisters. As you can guess - this was a lot of extra work. The jeering and criticisms of her alternative diet from the carnivores did not make for a harmonious home either. So it was short lived for her but not for me. I was a vegan until my mid twenties when I had a iron deficiency and then went vegetarian.  When Ellie was born as I have written about, I started eating meat again and did so until this January 2013.  To those of you who may have thought "See!" when I shared the iron deficiency - remember that I didn't say I was a very good vegan.  There were not the resources online (actually there was no  online other than email) available today.  And at that time I was a very, very poor artist living in Western Mass trying to figure out my life.  It was often a choice between should I buy this apple or this tube of paint? But that's another story.

Zooming back to the matter at hand, I am grateful to have found a mate who had no interest in a traditional, feminine mystique type, of marriage set up, where, as in the houses we were both raised in, the woman does all the cooking and cleaning and everyone sits down for meals together at the same time every evening. My experience with that growing up was to see how stressful all that cooking was on my mother. As a result she often over cooked the food and meals were a source of tension which only fed the fire of our family dysfunction.

Stemming from this, I never, ever wanted to have us all sit down at 5pm and have dinner. Ever. I rather not be married if this was the expectation. In fact, getting married at all was a stretch for me. I only did it to make sure Ellie was protected in all the ways children of married people are.  That, and to be totally truthful, I got tired of them stopping me in the emergency room as Ellie and Dave (she has his last name) would get ushered in and because I had a different last name they would stop me and say ask, "Who are you?" My exasperated reply was always, "I'm the mother!!!".  Seconds count when your kid has hydrocephalus - for crying out loud.  That had to end.

Orange Cashew Cream Dressing that Dave made
 when I was away on business.
Atop those strong sentiments, things with Ellie have also taken a non traditional path that meant differences in eating times etc. She only eats purees and does so about 5 times per day and before that was eating around the clock via drip feeds and had/has oral aversions.  So though we do sit down together regularly as a family usually on weekends, there is a lot of working with Ellie one to one around food and making it safe.  Additionally, Dave is not your traditional guy in that growing up he regularly cooked for his younger siblings.  He had a working mother and being the oldest he understood how hard she worked for both her job and the family - he didn't take it for granted.  As a result of all that cooking as a teenager, he knows how to fend for himself and others in the kitchen very well and did so before we met. Lucky me.

For the record - I do not cook meals every day for anyone but Ellie.  Dave and I cook for each other when we are already making something for ourselves.   We coordinate and both cook larger dishes like a soup or a casserole but again not every day.  He more often then not will make me dinner because he eats it regularly, whereas I do not. And he makes the best big salads that are filled with nuts and tons of veg and hummus for example.  I have been into making new vegan concoctions like lentil and rice chard rolls with cashew cream and smothered in tomato sauce and tons of green tonics and juices and cold soups - basically going 80% raw and 20% cooked. And he eats what I make when he wants and vice versa. But it's casual and 50/50.   Other than Ellie's diet which I made up all the recipes for and watch over very closely, we both do the cooking.

To answer the question directly, "What does your husband think (of me going vegan)", here is a list of his responses:
Life Alive inspired Buddha Bowl that Dave made

  • He bought us a half farm share at the local organic farm
  • He and Ellie planted a ton of seedlings that he purchased the seeds for by mail order and all the soil and pots etc., that he waters and tends to daily with Ellie when she can be torn away from her fijits who are a little more exciting than seedlings - though when they first popped out of the soil she was very excited! ;-)
  • He drinks green juices with me every day of his own volition
  • He solicits the choice and regularly encourages us to go to vegan restaurants.
  • He cut back on eating so much meat and increased his veggie intake and has lost 25 pounds doing so (that's been a really great side effect of me going vegan)
  • One night I came in and he was about to watch Vegecate on Netflix and asked me to join him. Since watching that he is researching how to get protein and iron out of plant based foods.

In sum, his reaction has been very supportive and he is still reacting in a way that is making me very happy in that he sees the positive changes in me and wants to come along down this path - in his own way but near enough to me just the same. He has lost weight and is feeling better. There is a lightness between us.  So that is what he thinks of it and how he responded to me going vegan for the 2013 record.

I think there are all different ways to structure a life and a marriage. The more creativity that is worked into that structuring the more room for individual expression and bliss. I am always alarmed and saddened to see that the legacy of hundreds of years of gender inequality is still with us. I lecture on this topic in my graduate courses so I know the stats. But in this question, "What is your husband going to eat?" there is found all that inequality as a societal norm - like DNA coding that seems very hard to change.

Saturday, October 03, 2009

Sleep, Bad Meds, and the Bus


September was a blur of no sleep and work. And even now I don't have any business blogging. BUT so much has happened...

First, we figured out that her Protonix, which our insurance company will only pay for if we get it through their compounding pharmacist, was off. Dave took some out of the red bottle in desperation because Ellie has not been doing great since late August when she started this new batch, and discovered it had a distinctly orange hue. He called the pharmacist and they said to stop giving it to her...scary, no? I am sending it to a lab to find out what the heck it is and not putting her back on it. To say this freaked me out is an understatement. I am holding judgement until we find out if it is Protonix or something else...ugh. The whole thing has just made me realize I have to get her off all meds. I have met mothers who have discovered that the meds they are giving their children were made wrong by the pharmacy. CVS lost their compounding license because of errors in making the meds. In some ways it seems like only a matter of time before this happens and one day...I can't even go there. ugh. I wish we could get it through our local pharmacy because they are a mom and pop shop, they know us, they care....Blue Cross Blue Shield paid allowed this.

Since we discontinued the bad Protonix she has been sleeping MUCH better. I also started her on two homeopathics: Nux Vomica, for nausea and indigestion, and Gelesium for it's overall soothing effect on the entire nervous system. It may be working...she has slept through the last 4 nights....but of course now that I write this...anyway...am hoping I can replace the meds with homeopathy or anything else, like even healing what is causing her to need these meds...yes, her brain. But, it's good not to forget this is our goal, to help her heal her brain. Since Obama lifted Bush's bans there has been lots of progress in this area spurred on by all the returning vets who have sustained head injures fighting in all the bloody war zones....

Second, Ellie is going to take the wheelchair van to school this Monday for the FIRST time....!
The good here: she is more independent and we get 3.5 extra hours a day (that we used to spend driving her) to work. Since I am always up late doing that work I don't get done during the day, and I am not a trust fund baby, this is a good thing. The fact that I could REALLY use the extra time makes me feel guilty about even suggesting she ride the bus because it's so self serving, which is something I try to put aside being a parent. BUT she is going to be 7 in November. I rode the bus from age 5 on and am none the worse for it, though how would I know, really? See the back and forth? The mind is a terrible thing sometimes...

The manager of the bus company came to our house this Saturday morning to see if Ellie's Rodeo would work in the wheelchair van. His name is Juan. Juan has a big smile and kind eyes. He's a dad. Ellie gave him a BIG smile the minute he walked in the door and he addressed her directly. All great signs. She will be the youngest on the bus and Juan has it set up that she is last on and first off, god bless him! She will have an aid who is trained in seizures and CPR. The other little girl riding the bus has a nurse...seems like it might be ok. We are going to follow the van to and from school on Monday to be there for her if the ride was bad. If she is really upset by it, that may be it. She has riden in a wheelchair van for school trips so that won't be a first. Juan assured me the aid would talk to her and help her with her toys...ugh.

I am equal parts freaked out (about her safety and her emotional and physical comfort) and hopeful that it will be ok. She will be 7. It's time...right? We will see.

Picture: Me and Ellie in Dublin City Center, Ireland this August.

Saturday, October 11, 2008

Reality Check: Still between a rock and a hard place

We had to start Ellie up on the Cisipride last night. And ya know, I am sad about that. The doctors said she had to discontinue it on the 5th for the surgery on the 8th. We did and found her to be none the worse. But Thursday she was a little gaggy and up all night, not vomiting, but refluxing and in pain. Last night and Friday, more of the same. Such a bummer. I was really hoping to get her off the Cisipride.

So in truth, it's the meds AND the food combining no sugar, low acid diet AND the Slippery Elm that are keeping her esophagus safe and healthy. Which also tells me that her reflux is THAT bad that she needs all of that still. The small bubble of hope exists in the fact that we have not upped her medication dosages on the Cisipride, Protonix, or Zantac in over one year. Will she grow out of needing them some day? That' s a question that can only be answered by looking at her brain damage and believing and brain plasticity and hoping that some of the alternative therapies we do with her help heal her brain. Hoping too that stem cell research will continue and find a cure for brain damage that is with out the risk it is today.

Signing off, from Earth, feet on the ground, trying to see it how it really is.