ausEE Inc.

a charity dedicated to improving lives affected by eosinophilic disorders

Tube Feeding Blog

This is a blog about Bella, a 7 year old with eosinophilic oesophagitis who after 6 years of drinking elemental formula orally (and struggling to reach required intake) has decided to and agreed to have a gastrostomy feeding device which she calls her "TT" (tummy tube)

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All systems go!

Posted on June 10, 2011 at 10:05 AM Comments comments (1)

Yesterday was the first day of the rest of our lives! I feel like a weight has been lifted off our shoulders and the pressure is finally off Bella to maintain her intake and it comes with such a sense relief to us all. I guess you can tell that all went well yesterday at the RCH… Once the anguish around having the plaster tape removed (there was about 4 layers of it after all!) we went up to a ward for the rest of the day and the nurses assisted me with carrying out a first feed with our infinity pump. I love our infinity pump! It is so simple to use and the tube feeding process wasn’t nearly as complex as I had expected it to be nor is the button maintenance that is required. She was fitted with a bard button device and it is stitched in place so no rotating is needed and it should be ok for the next 6 months or so – which will fit in nicely for a button change when she is due for her next endoscopy. (Bard button changes need to be done under general anaesthetic).

When we came home last night I set up 2 lots of 4 hour feeds during the night and all went smoothly so it’s all systems go from here. We’ll increase feed volume gradually over the next week to get to her goal intake which is 960ml of normal strength Neocate advance daily (based on the advice from hospital dietitian). We will monitor her weight gain as she may require more if she isn’t eating enough of her safe foods orally during the day. Stay tuned as this new feeding journey begins for Bella, who has coped remarkably well so far; such is my brave little (soon to be bigger) girl.

Waiting game

Posted on June 6, 2011 at 10:20 AM Comments comments (0)

It has been two weeks today since Bella’s gastrostomy. As it turns out we haven’t started feeds yet, we are waiting until this Thursday when the bandage dressing is removed at the hospital. When the HENS (home enteral nutrition service) nurse visited last week we were shown how to use a pump and the basic feed process but as we couldn’t see the tube entry due to the dressings we didn’t feel confident not being able to check for blockages etc. and neither of us were familiar with the bard style button maintenance so it was decided it was best to wait until we visit the hospital again before we start feeds.

Supplies have been arriving all week and I’ll have to find somewhere in the house to store them to get them out of the hallway – who’d have thought you’d need so much equipment! We now have a feeding pump, stand for the pump, feeding containers for the formula to hang up on the stand (they allow 1 per day), feeding tube sets to connect to the pump (they allow 1 per day), syringes for flushing before and after feeds and for bolus feeds, different size tube connectors (not sure what these are for yet!). We’ve also had to get a foam wedge to prop up her bed as feeds shouldn’t be done lying down. I think we are going to find it hard at the start to get her used to sleeping raised at an angle as when we’ve raised the bed before for reflux issues she just keeps slipping down the bed. Bella’s still been in great spirits; she’s not sore anymore and has been back at school for a week now.

So Thursday we see the surgeon for our follow up appointment and the dressing will finally come off and we’ll see what a bard button looks like for the first time. I know Bella’s especially looking forward to being able to have a shower again!

Surgey went smoothly

Posted on May 29, 2011 at 9:15 PM Comments comments (0)

Everything went well with Bella’s gastrostomy last Monday, better than we expected even. We arrived just before the 10am arrival time and were taken straight to the ward where we could wait by her bedside until her surgery was scheduled. We only had to wait until just after 12noon for her to be taken to theatre and we all walked down together and I went in the theatre room with Bella whilst they put her to sleep with the gas. They didn't bring her back up to the ward from theatre recovery until just after 2pm so we were starting to get anxious as I’d forgotten to ask how long she was likely to be in theatre (with her endoscopies we usually see her in about 20 minutes).

She was on so many painkillers that she just slept on and off for most of the rest of the day and when she awoke she was actually in quite good spirits. I think we all had a sense of relief that there was no turning back and that we can only go forward from here. It also made a difference that this time she did not having a really sore throat like she usually has after her endoscopies (tube was inserted surgically through the stomach, not via an endoscope).

The ward nurses were really nice and we had visits from the hospital dietitian also to discuss what foods would be safe for her to eat during her hospital stay. I had packed some food from home and her formula and cups (I don’t ever leave home without supplies) but their policy was to supply and make up the formula which was a bit of an inconvenience considering she only drinks it freshly made and not reheated but we managed. Bella was given round the clock pain relief whilst at the hospital too but we didn’t need to continue with the panadol after she came home the next day because she was feeling quite well and not too sore, just a bit uncomfortable and having to get used to the feeling of the very large bandage across her stomach. The surgeon has written on it in black marker DO NOT TOUCH! NO! NO! NO! as it can’t be removed for about 2-3 weeks - so sponge bathing only at the moment so it doesn’t get wet!

We’ve been home since late Tuesday (only had one night hospital stay) and now today is the first day we can start using the tube for feeds. The hospital dietitian arranged for the home enteral nutrition service nurse to come to our house today to show us how to use the pump and supplies so the learning curve begins. Bella has handled the last week like such a trooper and I am so very proud of her.

We have a date for surgery

Posted on May 16, 2011 at 9:30 PM Comments comments (2)

Just got the letter from the hospital yesterday, and yikes, only one week notice for us to mentally prepare again - the surgery is happening on Monday 23 May.

Bella's lost a bit of weight so far this year with not eating or drinking enough neocate so I know in my heart we've done all we can over the last 6 years since her EoE diagnosis and that this is the best step for her to have a brighter and healthier future. I just hope all goes smoothly and that Bella finds the benefits to make it all worthwhile. I just want my little girl to be happy, thrive and glow...

On Surgery Waiting List

Posted on March 7, 2011 at 10:45 PM Comments comments (2)

Last Thursday we had an appointment at RCH with the paediatric surgeon and we were told the waiting list is only about 1-2 months for the surgery so that is good news. It will be a bard button inserted (different to the peg and mic-key) and we were happy to hear that it is likely to only be a one night stay in hospital. If all goes well we would be able to go home the next day and then we would have to go back again after a week to commence feeds because with this type of insertion the feeds can’t be started until a week after surgery (after a gastrostomy peg insertion feeding can begin usually after 6 hours). On the hospital scales we discovered Bella had lost nearly a kilo in the last month since our last visit so that was just further validation that we have made the right decision. Since going back to school (grade 2) she has been struggling with energy levels and has even fallen asleep in class on a few occassions... the teacher has had to call me a few times also because she has just been too weak or dizzy to participate in the class. Bella is still ok with the idea of getting a feeding tube and understands the reasons why it is needed, although we’re on strict instructions from her not to talk about it!! Now we will just wait for the appointment and hope she doesn’t lose any more weight whilst we are waiting (she is 7½ years old and 17.1 kg currently).

 

Surgery - To Be Continued...

Posted on January 22, 2011 at 9:30 PM Comments comments (1)

Thursday didn't quite go as planned. Unfortunately when they were performing the endoscopy they discovered Bella's stomach was in a position too much under her ribcage and there was no safe place to insert the peg feeding device. They tell me this happens in about 1 in 30 cases. It's disappointing for us as we'd come so far mentally to prepare for this and Bella was ready for it too. It was hard to tell her it didn't happen when she woke up and she had a sore throat and all the surgery prep for nothing (she got given a powerwing soon after though so she’s happy). She'd enjoyed the break from the pressure to eat and drink since she’d made the decision but we’ll have to persevere with this a bit longer now as we can’t afford for her to loose anymore weight and especially with school starting tomorrow she’ll need the energy. The next step for us is we have an appointment with her gastro on 31 January and we'll discuss being referred to a surgeon as there is another way to insert the feeding device which is by a laparoscopic gastrostomy. We are very proud of Bella for being prepared to have the feeding tube in the first place and we are so blessed that she has such a good spirit dealing with what life throws her.

Getting Ready for Thursday

Posted on January 18, 2011 at 3:33 AM Comments comments (2)

Today I’m getting ready to pack for our trip to Brisbane hospital tomorrow. Bella’s surgery is scheduled for early Thursday morning so we are staying the night before near the hospital so we don’t have to do the crack of dawn drive from the coast. It should only be an overnight hospital stay for Bella so hopefully we’ll be home Friday. Today was a bit of a rough day for Bella, we were at her friends place and she was having a swim and after the swim she just broke down in tears that it would be her last swim and why did she have to have a tummy tube, why does she have to have EE etc. It was only the second time surprisingly that she has become really upset about it since making the decision and I know that it has been on her mind a lot. She knows she will be able swim again in about 12 weeks when we switch from the peg to the button but 12 weeks seems like a very long time at her age – and there goes the rest of summer.

We went to the doctors yesterday to get travel forms completed and script for more Neocate and he weighed her again to get a good starting point before the tube and she was 18kg. She’d put on 600g since last weight taken in October so I thought that was pretty good but he said – that’s practically a wee and bowel motion – you are doing the right thing and he told me he hasn’t come across anyone who has regretting getting a tube. I know I shouldn’t need validation, but it really helps to hear it. I’m feeling so much mixed emotions right now and I’m very worried how she will react when she wakes up from the surgery and I’m not expecting a positive reaction from her at all but hope with all my heart that she gets used to it and feels the benefits to make it all worthwhile. She’s never gone under very well with previous scopes either with her kicking and screaming so much she needs to be held down by every available person in the theatre. It will be a very emotional day for us and the days following as we learn the new ropes.

The Decision

Posted on January 9, 2011 at 3:24 AM Comments comments (2)

I thought it would be a good idea to put in writing my thoughts during this process – therapy if you will, and hopefully it may help some other parents going through something similar along the way. For us this has not been an easy decision and certainly not one made overnight. Bella was diagnosed with eosinophilic oesophagitis (EE) at 18 months old and she has been on the bottom or off of the percentile charts from when she was 4 months old so has always been classed as failure to thrive (FTT).

 

The possibility of a feeding tube had been raised many times over the years but I guess serious talks only started a few years ago when she was just about to start prep/school and we decided against it at the time because we were worried about the psychological impact it would have on her. Bella was completely and utterly adamant she wasn’t having it. Every time it was bought up she would beg us, "I promise I’ll drink more, I pinky-promise I’ll eat more". We couldn’t even mention the TT word without her breaking into tears so in her mind it ended up being a very negative thing. We may or may not have taken the right path by letting her make her own decision on this but as she was capable of drinking and eating physically on her own ,she has always just scraped through holding her own. We just couldn’t force it upon her and decided to continue with the constant struggle and battle for her to get enough of that all-important intake.

 

In hindsight (as it has turned out) not getting the tube for her when she was younger has caused just as much (if not more) psychological impact on her with the never-ending pressure and focus around food. Neocate has been put on her each and every day of her life. I can’t even begin to list all of the things we have tried over the past 6 years to get her to drink more, and the advice we have sought (and not to mention the well-meaning advice given but not asked for), we have tried positive encouragement, endless reward charts, bribery, negative and positive consequences, talking about it, not talking about it, letting her eat what she wants when she wants, having structured meal times and once I even tried an online pet that she had to feed every day in order to keep it healthy. This plan quickly back fired because she wanted to make the online pet sick because it was fun to take it to the online hospital!!

 

Meal times have rarely been a happy time at our house and we now also have a 5 year old daughter Olivia who has picked up some bad habits along the way that need addressing. Of course, we have gone to all these great lengths as all parents do in an effort to reach the goal of having a healthy happy child. Whilst Bella is happy most of the time she does still and always has experienced some pain and symptoms and she (it breaks my heart to say) has never looked like the ideal picture of health and gets tired very easily. It didn’t take long for us to notice a difference between our two girls when Olivia came along and with the two year age gap they weigh the same. Bella has become increasingly conscience and worried about her size and comments on this often. We just want her to thrive and be the best she can be for herself. She has done as well has she has only because of Neocate for her main nutrition and our many trips for McDonalds chips to help with the fat intake (and let me say a lot go in the bin as I now actually am sick at the sight of a hot chip)! We are extremely thankful that she was able to drink the Neocate as long as she has but as she has been getting older it’s been getting harder and harder for her to drink enough of it and now she has begun to get anxious about other people seeing her drink it and doesn’t like to be seen as different than her friends.

 

So what helped us reach the decision? Well for my husband, Jason and I, we have accepted that this would be the best decision for her health and since getting more involved with the EGID community I’ve heard a lot of success stories about kids who have feeding tubes and how much pressure has been lifted and how well they have grown with it. We feel like we are pretty much at the same point now with Bella’s FTT from when we started and we’ve all put in heaps and heaps of effort but haven’t been able to ever reach the goal and the stress is taking its toll on us all. We’ve begun to regret not doing it earlier but we can’t turn back the clock so if every year we say we wish we did it when she was younger then we’ll be always be saying that and we’ll never get on top of it and she may possibly never get the best chance to reach her full potential.

 

For Bella it’s a bit of a personal story for her about why she came about the decision and when she actually said the words “Ok, I’ll get a TT” to me, two weeks before Christmas I didn’t believe it – you see she’d said it before over the years when she’d reached breaking point and then immediately taken it back and ended up in tears and even more against the idea then before but this time she didn’t take it back and she seemed to actually be really at peace with the idea. I wasn’t game to even mention it to her for days after she said it in case she changed her mind! I tippy toed in the background making the arrangements to get an appointment for it so we could start the school year with the tube. Gradually since then she has wanted to talk about it little by little and then I started to realise it was actually going to happen – then OMG it set in – this was actually going to happen and this would be a turning point in our lives (we are really hopeful for a turning point for the better).

 

So whilst I don’t want Bella to read my Blog until she is old enough to understand, I asked her if she wanted to write a Blog about her thoughts (her first post is titled Meet Bella and it’s in her own words which she typed herself - though I did have to help with some of the spelling).

 

Well, I was planning to write about how I felt initially after the decision was made but I’ve written too much already so I’ll have to save that for another post another day…

 

Sarah

Meet Bella

Posted on January 8, 2011 at 10:01 PM Comments comments (0)

I am Bella and I am 7 years old and I'm about to have a TT which means tummy tube. I will get the TT just before I go back to school and I'm going to be in grade 2. I said I would have a TT because I am tired of feeling sick and I want to be healthy. Mum got me new pjs because I always wear nighties and Mum got me a cd and headphones and is getting me a cd player to take to the hospital with me.

Bella


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