Pet parent of Marley | Newfoundland | 9yrs old | Idiopathic Megaesophagus – diagnosis April 2017

 

Author: Emma Jane Hughes (Cornwall, UK),  December 2017

Pet parent of Marley | Newfoundland | 9yrs old | Idiopathic Megaesophagus – diagnosis April 2017

 

Feeding Tubes: Cold they save your dog’s life?

 

Marley’s Story

 

I wanted to write about Marley’s story to provide reassurance to everyone considering a feeding tube for their beloved Megaesophagus dog.

 

I found myself scouring the pages of http://caninemegaesophagusinfo.com to try and learn all I could about my beautiful Newfoundland’s condition and how I could help him. It felt like we had tried everything and, although some things worked for a time, Marley’s condition seemed to be spiraling in the wrong direction. I was terrified and at my wits end. Every time the vet would mention a feeding tube I would become very upset and I felt like I had failed my boy in some way. I resisted the tube for a very long time, fearing I would be doing the wrong thing and feeling completely overwhelmed. My partner James had even said that, by the time we needed to consider a feeding tube, it might be the right time to consider saying goodbye. Following our vet’s expert advice, we went ahead with the tube after much soul searching, stalling, ‘pros and cons lists’ and second opinions and, now, I couldn’t be happier. I wish we had done it sooner! With his feeding tube, Marley is now bright, lively and back to his old self – something I never thought possible after months of illness. After he had recovered from the surgery it seemed like Marley’s whole face had changed – his furrowed brow was gone and he had his twinkle back. It was the most amazing thing. It has of course been a tough road with many emotional and financial challenges and lots of hard work, but it finally now feels that we have turned things around for the better. Although every situation is different, I hope our positive experience can help other ME pet parents in some way. I have made 7 videos on Youtube https://www.youtube.com/channel/UC-DH13HKLdTcGg2f0mR99Vg to show you what we do each day (links below) but let me tell you more about our story…

 

Background and issues leading to our decision:

In April 2017, after years of trying to find out what was wrong, Marley was diagnosed with Idiopathic Megaesophagus (ME). Marley loved to swim and his diagnosis came after he woke us up in the night struggling to breathe. We later found out that this was because he had aspirated – the salt seawater had irritated his esophagus from swimming and caused him to regurgitate all night. We were encouraged to visit a specialist vet 2hrs drive from home who soon confirmed a diagnosis of ME through X-Rays and an endoscope. I was devastated. Our local vet at the time had very limited experience with ME and, it was only through seeking the regular help of the specialist vet that diagnosed him, as well as the help of others on the amazing Facebook “Canine Megaesophagus Support Group” https://www.facebook.com/groups/4329632343/, that we found the support we really needed.

 

For a while feeding Marley 3 meals of meatballs ‘posturally’ from a height whilst he ate in a sitting position worked ok, followed by 30 mins sitting time after each meal. We found that this, combined with antacids (Omeprazole and Zantac), a ‘Super Neck Hug’ from http://www.wagtailfarms.com/superneckhugs.html worn all the time, thickened water using “Thickit”, and regular doses of Sucralfate given 1hr before meds and meals, reduced his regurgitation. It took us a long while to get to this point with trial and error and a lot of vet visits to ask about advice I had sought from other ME pet parents. Gradually this feeding method became less effective and Marley’s regurgitation worsened. We built a huge Bailey Chair for our giant 67kg boy and gradually trained him how to use it to get him more upright. Nervous at first due to Marley’s age (8.5yrs old at the time), size and his arthritis, we persevered and Marley did relatively well in his chair. On 12th July (our wedding day!) my boy became really sick and we rushed him to the specialist. Marley had Aspiration Pneumonia (AP), a kidney infection and was severely dehydrated. After being hospitalized for a week, Marley came home but didn’t want to eat regularly. It was a battle to get the lifesaving antibiotics down him and Marley would only eat minced meatballs and picnic sausages which aggravated his Irritable Bowel Disease (IBD), making his regurgitation more frequent (up to 14 times a day) and gave him regular diarrhea. Every time Marley sat in his chair I was terrified that he wouldn’t eat. He was loosing weight fast and was weak and tired.

After 6 weeks of this, our specialist suggested that a feeding tube would be an option to give Marley “a break”, but I was adamant that I wanted another week to see if I could try harder to make things work… and then another! In this time, we slowly managed to wean Marley off the food that was aggravating his IBD and back on to his normal kibble meatballs. After a huge uphill battle, we finally felt like things were moving in a positive direction again.

 

Everything changed the following week when we took Marley for an X-ray to make sure his AP had completely cleared. The X-ray confirmed this, however, to our astonishment, it revealed 13 meatballs stacked up in Marley’s esophagus, one above the other, 3 hours after eating.  I was devastated again, especially as Marley was perky that day and seemed quite happy. If Marley could withstand this, what else had he quietly endured? I knew it was time for the tube.

Marley was still weak but coped with the surgery well. (I was a wreck of course after I had read and been advised about all the possible complications that could occur!) He had a temporary feeding tube fitted initially and later had a low profile PEG tube placed which we much prefer. Following surgery, Marley was at the specialists for a week whilst they checked his tube placement and gradually began introducing food and water through the tube.

 

When we picked Marley up, much to our surprise, he raced around the grassy play area outside. I can’t quite describe how much his face had changed. He was perky and had energy. His fur was smoother on his face and his ears relaxed. I was terrified again when I was shown his tube for the first time but this noticeable change had already made it worthwhile in my eyes. I instantly knew I had made the right decision for Marley and all I needed to do was get over my own anxiety about tube feeding. After several ‘wobbly’ weeks, and the helpful advice of another ‘tuber’ on the Facebook support group, I discovered that, in my experience, tube feeding is not the ‘big deal’ I had thought it might be and nothing went wrong with tube feeding overall despite my fears. The PEG tube port looks a bit like the toggle valve of a camping air mattress! The connecting tube from the body wall to the stomach is held in using a little doughnut shaped balloon filled with water – a bit like a ‘butterfly back’ on an ear piercing. It’s a tidy piece of kit and it’s very simple to use.

Here is a video showing how we prepare Marley’s food and feed him using the feeding tube: https://youtu.be/fRJerFM4oXQ

 

Initial feeding after the operation:

Marley needed to be fed in small meals 5 times a day after the operation to help his body get used to this new way of eating. After several weeks we reduced this to 4 meals and hope to reduce this again to 3 meals a day once Marley has regained a healthy weight. We feed Marley his regular kibble, ground in a Nutribullet, mixed with water. We grind Marley’s medication (Omeprazole and painkillers for his arthritis) using a pestle and mortar and give this in his tube also. Marley has nothing by mouth except doses of liquid Sucralfate to help heal his esophagus when he needs it.

 

Healing after surgery: It is important that you clean and dry the tube area well each day to prevent infection (as directed by your vet). Marley’s skin around the first temporary tube became infected but we treated this effectively using ointment and by ensuring the area was dry. Once the low profile PEG tube was fitted (to replace the temporary tube) the infection cleared up. I was worried about cleaning the tube site at first (I’m not used to this kind of thing) but now it is second nature like cleaning your teeth or brushing your hair in the morning!

CLEANING: https://www.youtube.com/watch?v=nVLMEymQDN8&t=2s

 

Feeding and Upright Time: As Marley is a giant breed (67kg / 147lbs) and eats much more than me (920g of kibble and 3.2L of water a day!) each feed is around 30 mins but I would imagine the time commitment would be less for a more regular sized dog requiring less food. His food preparation is a lot quicker than making meatballs and much less expensive for us as we no longer need to use ‘Thickit’ or ‘jelly blocks’. As saliva can still pool in the esophagus, especially overnight, Marley still has some upright time where we ask him to sit on the couch for 20 mins several times a day.

 

UPRIGHT TIME AND TUBE FEEDING: https://www.youtube.com/watch?v=gjnaVS36evk

 

 

Regurgitation, Aspiration Pneumonia and Upright time:
I remember feeling disheartened when I learnt that Marley would still require upright time and that he would still regurgitate and be at risk of Aspiration Pneumonia – even with a feeding tube. Marley still regurgitates saliva (and has recently has esophagitis and regurgitated white slimy foam) but this is much less frequent. As there is no food in the regurgitation and the regurgitation is reduced (now 1-3 times a week rather than 3 times a day) I have been assured that the risk of AP is very much reduced. Marley did develop a high temperature several months after his surgery, which we treated with antibiotics in case of AP and we are always very vigilant. However, Marley has IBD (Irritable Bowel Disease) which exacerbates his regurgitation.

 

Oral Care:

 

  • Dry Mouth: The vet recommended that we make sure Marley doesn’t have a dry mouth by swabbing around his gums using a bit of kitchen paper towel soaked in water from time to time. We do this when Marley is having upright time several times a day.

 

PREVENTING DRY MOUTH: https://www.youtube.com/watch?v=L6CEu1hrwk0

 

  • Teeth cleaning: Tartar builds up in the mouth more readily and brushing teeth is recommended

Protecting the tube site and useful things you’ll need:

 

  • Tummy Band: Initially, whilst Marley was healing, he had bandages to protect his tube site around his tummy. These often moved around and another ‘tuber’ recommended we make a tummy band out of neoprene. We have experimented with neoprene weightlifters belts that we buy on Amazon (and cut to our dogs size) and softer cotton pregnancy tummy bands we buy online also to protect the tube site on walks. It is important that your dog doesn’t pull out their tube ports or catch them on anything (although they can be refitted at the vets). As Marley wears his Super Neck Hug and his soft cotton ‘pregnancy band’ at all times when he’s at home and his thicker, more protective, neoprene band on walks, this seems to suit our needs very well. Our specialist is now recommending the weightlifters belts to others.

 

TUMMY BAND: https://www.youtube.com/watch?v=GYcOA1_lGCk

 

  • Blender / Nutribullet: We use a Nutribullet to grind Marley’s food into a powder and then add the water afterwards.

 

  • Pestle and mortar: To crush medications into powder for tube feeding

 

  • Neck hug: As before, to elevate your dog’s head when laying down/sleeping, reducing regurgitation.

 

NECK HUG: https://www.youtube.com/watch?v=frkCT6UqLVo

 

NECK HUG FITTING: https://www.youtube.com/watch?v=ARrnE3g1fag

 

 

 

 

Why we love the tube:

  • Marley is no longer uncomfortable after he eats and has regained his energy and his regular weight

 

  • The risk of AP is reduced as there is no food in Marley’s regurgitation, which is less frequent (and consists of saliva).

 

  • If Marley becomes unwell, I can still give him his food, water and medications via his tube, maintaining his weight and keeping him hydrated. I don’t need to deviate from his regular food to entice him to eat.

 

  • Marley does less upright time and this relieves pressure on his joints helping his arthritis.

 

  • Marley adapted very well to his tube from the outset. He can smell his food at feeding times and feels full and hydrated after his meals. I was worried that he would try and ‘find’ things to drink and eat as he would miss the action of eating and drinking but this did not happen (he still licks up 20ml of liquid Sucralfate each day from a bowl). He stands still when we are feeding him and he even goes to his feeding spot when he’s hungry!

 

  • I feel reassured that I have done everything I can for my boy to manage his condition. Once I overcame my own fears about tube feeding, it felt much easier for me than preparing meatballs and worrying about the repercussions of food getting stuck in Marley’s esophagus.

 

  • We have seen a fantastic improvement in Marley and, after a very difficult time since our diagnosis in April, things are leveling out at long last!

 

 

 

 

Things I didn’t expect:

  • The frequency of feeding at first following surgery (5 times a day) – you may need to make provisions to accommodate this. We are now reducing this slowly and hope to get to 3 times daily.
  • How well Marley adapted to his tube feeds – very positive.
  • The improvement I saw in Marley so quickly after the tube was placed.
  • How well I adapted to the tube feeds (after a few weeks of anxiety as I adjusted)
  • What a positive difference we felt when we moved from the temporary (more bulky) tube to the low profile PEG tube. Much easier to manage, clean and protect day-to-day.

 

 

Other observations:

  • I share the responsibility for tube feedings with my partner and we have changed our work schedules around feeding times. This has sometimes proven difficult and we are hoping to reduce feeds to 3 times a day (but cannot reduce it to any less than 3). I don’t feel comfortable leaving Marley but we are able to travel with Marley if we have his food and feeding syringes. We have recently had Christmas lunch out at the pub – finding a quiet area for a quick tube feed before we had dessert! It worked fine and we just needed to ask for some boiling water to make sure the liquid food was at the right temperature. Just like having a baby I guess!

 

PLEASE ENSURE YOU WORK WITH YOUR VET SPECIALIST WHO WILL ADVISE YOU ABOUT THE BEST TREATMENT FOR YOUR DOG. Not all dogs are good candidates for feeding tubes and, like any surgery, the operation to place the feeding tube and recovery afterwards has associated risks.

 

~*~

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