Nate’s stomach is currently feeling the best it has in years.
Now this may quite likely be a “good patch” but could it be that after years of pain and frustration we are finally managing, or possibly even treating Nate’s gastro symptoms? *gasp*
Nate’s feeding saga is a long one. Honestly don’t bother reading this unless you have a particular interest in tubies, tubes, or have a child with ATRX. It’s not going to even try to be amusing, sorry. This is more of a brain fart. A garbled attempt to write it all down. So much has happened over the last 8 years that I get confused about timescales and chronological order so there will probably be some inaccuracies. I’ll need to edit, and then edit again as I remember bits and pieces.
For a long time respiratory problems were Nate’s most pressing concern so although I suspect gut issues were always there, they weren’t the priority in the early days/ years- keeping Nate breathing was.
At birth Nate didn’t do much at all really. His breathing was utterly rubbish, he couldn’t latch on to breast feed, and he had poor coordination of his suck and swallow when trying to take a bottle. A nasogastric tube was inserted and he needed oxygen via nasal cannula. That’s how we brought him home. Not knowing how long he would live for, or what condition he had, just that it would be something life limiting. We spent months giving formula with gaviscon through his NG tube (no feed pump and a thick consistency meant aching arms) after first trying to get him to take a bottle. The NG would come out when Nate was doing well but there was a very specific technique required to feed Nate and an awful lot of air swallowing went on. We had variable success with bottle feeding, and Nate only fed from the cheapest brown teated bottles you could find. Nate would feed fine one day and not the next. He would spent a few weeks at home, then a few weeks in hospital, then slightly longer at home, followed by a further admission. All due to respiratory problems. All requiring huge amounts of oxygen and some finger crossing. While at home we attempted to wean Nate on to baby food and puréed meals but each time he was admitted into hospital with a respiratory problem the NG would inevitably go back down.
As Nate approached his second birthday we made a determined effort to wean Nate from the permanent oxygen he still required during the day. Carrying a CD oxygen cylinder on my back while carrying Nate is definitely on my list of tricky things to do. To ditch the oxygen Nate was required to gain weight consistently and for this to happen the NG tube had to stay. Oxygen weaning was a success and Nate managed to discard the daytime oxygen and continued to persevere with oral feeding. I would spend hours trying to get Nate to finish a meal but he still couldn’t manage to move much food to the back of his mouth and then swallow it. He refused to eat in front of our SaLT, and the video fluoroscopy showed he had a safe but late swallow. Nate continued with his intermittent hospital admissions but began to spend longer at home. Nate displayed some pain during this period but it seemed to have a specific reason for example a urine infection or constipation.
This inconsistent feeding continued and Nate struggled to maintain any weight he had gained. His doctors seemed quite happy for him to keep a NG tube for top ups and for us to continue to peresevere with oral feeding. I felt we were making little progress, it was like banging my head against a brick wall. Hours and hours were taken up and Nate got to do very little except what felt like force feeding, and if anything Nate was coughing more and more with the NG in situ ( so would you with a plastic tube at the back of your throat). At one point I was reinserting the NG 4-5 times a day as he hated it so much and would pull it out. Nate’s constipation was horrendous causing him to scream for days and he would also vomit large amounts. He had strange episodes with marked colour changes which coincided with oral feeding, and would scream in pain without any clear reason. We began to ask about more permanent solutions to feeding and giving meds. Eventually the drs listened and after a failed PEG ( percutaneous endoscopic gastrostomy) insertion as Nate’s stomach was in the wrong place ( which did explain why the air he swallowed had such a dramatic affect on his breathing) and he had a gastrostomy placed laparoscopicly just before his 3rd birthday. It’s shouldn’t be any surprise after reading the above to find that Nate’s chesty problems diminished once oral feeding was reduced...
Initially Nate had a long Monarch gastrostomy tube. It wasn’t fixed in place (as most gastrostomy tubes are) by a ballon or disk as the plan was to swop it for a gastrostomy button as soon as possible ( once the stoma had healed). Unfortunately I accidentally trapped said gtube in Nate’s pushchair when lifting him and so brought forward the insertion of a gastrostomy button by a month or so...
#epicparentingfail
The resulting gastrostomy button was neat and tidy, and easy to replace if it broke or blocked and I was happy to change Nate’s.
Nate continued with formula feeds with some small amounts of food eaten orally on occasion, however one negative effect of the gastrostomy was an increase in his reflux. He was sick more and more and travelling anywhere in the car was a nightmare. He would have better spells where he was less vomity but we couldn’t work out why. Absolutely demented with the amount of vomit regardless of which feed we used I decided to try Nate with real food through his gastrostomy. At this point we had just received Nate’s diagnosis of ATRX syndrome ( aged 3 1/2) and with aspiration pneumonia being one of the most common causes of death within affected individuals we were understandably committed to finding a solution.
At that time using a blended diet (BD) wasn’t well supported or even approved of really but we went ahead with it. I’m perfectly capable of identifying and minimising risks, and the possible benefits certainly outweighed any. I will confess I fell into the trap of massively overthinking the change over to BD. I agonised over calories and balancing out his diet. I stressed about how to wean off formula and introduce food but the more I thought about it the more it made sense. So after playing around with BD and formula for a few weeks we went straight over to 3 meals a day. The results were overwhelmingly positive. Nate’s reflux settled and he gained weight. The constipation vanished and he had a good year or so. We were still seeing pain and vomiting although these episodes were separated by long episodes of, well, being ok. My thoughts are that these episodes had always been there to some degree but were masked by reflux and intolerance to formula feeds.
After a referral to gastro they recommended a low FODMAPS diet which made little difference to Nate’s symptoms and led to a large weight loss. Intolerance tests came back negative and an endoscopy showed his reflux was well managed so neither were the issue. Nate was passed on to another gastroenterologist as his episodes of pain and vomiting seemed to be of a cyclical nature and were worsening. He would scream inconsolably for 3 or 4 days followed by being unable to move anything along his gut. Food would sit in his stomach as he filled with gas and would need frequent venting of his gtube - -without this Nate would be sick. There would be a struggle to manage symptoms for a week or more and then all of a sudden problems would stop and things would go back to normal. This cycle was usually monthly but it began to change, happening much more frequently and Nate would only have a week or so where he was comfortable before the whole thing would start again.
Two years ago Nate has a trans gastric jejunostomy button inserted through his existing gastrostomy site. The plan was to stop feeds to his stomach during these episodes of pain and where Nate didn’t tolerate his food. We were to use the jejunostomy port for feed or dioralyte and have a top up jej feed at night when well. Using the jej for feed allowed the gastro port to be on free drainage which would help drain gas and sicky stomach secretions. Yes it’s as lovely as it sounds. This gave us a means to manage Nate at home and not worry about dehydration or weight loss, however extreme pain was still an issue and he ended up with a oramorph prescription. Gastroparesis, abdominal migraine and cyclical vomiting were all possible causes for the symptoms Nate had been displaying for years but as there is so much overlap between these conditions it’s hard to know which is the actual culprit.
Over that first year with the GJ Nate spent more time on a continuous jej feed than off it and his weight plateaued. Continuous feeds are quite restrictive and my son likes to play with his tubes, tangling and detaching, covering himself in milk. My ideal scenario is having Nate on a jej feed for the shortest time possible. His doctors didn’t want to try certain drugs as they interacted with already established meds and although an antisickness med was introduced they held back on the harder stuff. The general feeling was that Nate’s gut was deteriorating and that he would probably need to be kept on a jej feed at all times, although at his worst even jej feeds weren’t tolerated, and an eventual need for TPN was a possibility. This concerned me greatly. We were incredibly frustrated at the lack of creative thinking by health and at one point Nate was referred to a palliative care team at another hospital in a bid to manage his “difficult symptoms”. I ended up attending an appointment and suggesting antibiotics and going dairy and gluten free ( even though he didn’t have a proven intolerance or allergy) in an attempt to change something. To try something. Nate was miserable, as were we.
Things got a little bit better with the metronidazole and change in diet- he had a better “patch”. Not great, but more manageable. We then had a spell where Nate would aspirate an impressive amount of blood from his stomach. Sometimes dark brown sometimes bright red. Gastro weren’t particularly helpful, and during this time we didn’t have a named gastroenterologist managing Nate. Alongside these issues Nate was having odd tonic not breathing episodes and his usual breathing problems. Also in the never ending crap-fest that is his syndrome were manic episodes where he would go without sleep for days, jerk about and sweat profusely while being awake but glassy eyed and unresponsive to us. These problems were getting worse and Nate’s neuro prescribed Risperidone to see if it would help. At the time he stated that another potential benefit which had been noted anecdotally was that this drug could have a positive impact on Nate’s gastro issues...
AND IT HAS!!!!!
It’s been three months now since the last gastro episode ( not including a stomach bug).
*edit 13/06/18 - 5 months no gastro episode*
*edit 13/02/20 - a couple of very minor blips but no major episodes*
So that’s where we are at the minute. Two blended meals during the day and a jej top up at night. I even had a conversation with Nate’s dietician a few weeks ago about dropping the overnight feed and reintroducing breakfast. I suspect Nate’s cyclical issues are still there simmering under the surface, he will have an odd cry out at times, but they are clearly not what they were. I am conscious that this may be a simply a ridiculously good good patch. But fuck it we will take whatever we can get.
( Red mark on Nate’s forehead is from his overnight mask he hasn't bashed himself)
BIG NEWS!
**Edit 20.8.20 Nate has had his trans gastric jejunostomy removed and now has a spangly new gastrostomy button**
AMAZING!!!!
It’s relatively unheard of to move back to a gastrostomy button from a GJ as in general gastro issues are progressive. This may just be a good spell, but we are rolling with it, especially considering his tonic episodes are shocking at the minute. Nate’s GJ has been on its way out for a while- the white disk kept falling out and the gastro port wasn't draining easily. Then the balloon burst which holds it in place. The agreement with gastro was that should it totally break the community nurses could remove it and put a standard gastrostomy button in. They came this morning but were unable to pull it out. After much pulling I was instructed to take Nate to A and E so that it could be removed in a safe environment in case anything went wrong. After waiting an hour in our local hospital’s A and E I was told I had come to the wrong one 🤦🏼♀️ and had to go to the other hospital that deals with Nate’s care. Suffice it to say I was not best pleased. At our other hospital a lovely young nurse lubed the tube and it came straight out with no pulling at all.
So to quote Orlando Jones in the 00s film Evolution,
“There’s always time for lubricant”
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