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reflux

Anthony’s Airway

Anthony has never had a very good airway. When he first joined our family in 2000, I remember listening to him snore while sleeping and thinking he may need a tracheostomy some day. But we managed his airway with positioning, occasional oral suctioning and Anthony’s nice strong cough. Even though he did sometimes have trouble handling his own saliva, he was always able to clear his lungs with a cough.

In 2006, he had a spinal fusion (lots of posts about this surgery if you search some of the earliest posts on this blog). The fusion was for his scoliosis and the surgery was very successful. His orthopedic surgeon was very happy with his nice straight spine. Problem is that the surgery and/or straightening seemed to make his gastric reflux worse. Maybe his old fundoplication unwrapped or just having a straighter esophagus was enough to bring stomach content up to the back of his throat. Again, his strong cough helped, but over time, it got harder and harder for him to tolerate his G-tube feedings.

In 2010 we decided to switch out his Mic-Key button (G-tube) for a GJ-tube. This is a longer tube that is threaded via the g-tube opening through the stomach and into the jejunum (first part of the small intestine). With a GJ-tube, feedings and/or medications can be given in the stomach or small intestine. Feeding via the small intestine greatly improved his reflux and things went well for a while, until one morning when there was blood coming out of his tube. We took him to the ER and long story short, he had an intestinal volvulus (also documented in this blog). This was an emergency surgery situation that required a bowel resection.

Eventually, he had another surgery to place a separate J-tube below – or down-stream from – the bowel resection. During this very long recovery he came close to having a tracheostomy because his airway was floppy and his tongue was sometimes blocking his airway. But once he was fully recovered his airway improved. Not great, but also not to the point of needing a trach.

Fast forward four years…Rich and I decided to take a vacation, just the two of us. Anthony and Natasha went to a skilled pediatric facility, Eric went to a respite house and Aaron went to Auntie Joyce’s house. This involved lots of work and coordination in order to get away, but we had a wonderful week in the Turks and Caicos.

The day after we got home, we got a call from the nursing center saying Anthony had a gagging episode and had aspirated. He was transferred to Lowell General Hospital where they wanted to admit him, but we had him transferred to UMass Memorial University Campus. He was obviously sick, but we were able to take him home on antibiotics. But he was not improving and his lungs and airway were in bad shape. He ended up being admitted to the ICU and placed on a ventilator.

After a week in the hospital he came home, but his airway was just not getting better. It was very hard to watch him struggle to breathe. He had to be positioned very carefully in order to maintain a decent airway. It was time to revisit the tracheostomy.

We had him readmitted because again he was not improving and we had an ENT (otolaryngology) evaluation as it seemed that a tracheostomy could no longer be avoided. After much research and consultations with Anthony’s doctors, we decided that the best option for Anthony would be a laryngotracheal separation rather than just a tracheostomy. This was a more involved surgery but would help Anthony with several of his problems: mechanical airway obstruction (big tongue) and sleep apnea that went along with his obstruction, chronic aspiration of saliva and reflux which was still a problem because of normal stomach acids.

laryngotracheal-separation

A laryngotracheal separation is different from a regular tracheostomy because rather than just placing a trach tube in the airway, the trachea (wind pipe) is actually disconnected from the upper airway. The trachea is separated and the upper portion is stitched closed and the lower portion is brought out and sutured to the neck, so that he is a total neck breather. This means that the nose and mouth are completely cut off from his lungs leaving no way for saliva or stomach acids to get into his lungs.

anthony

On Wednesday August 6, 2014 Anthony had his laryngotracheal separation. He is currently in the ICU at UMass/Memorial. He was initially on a ventilator post-operatively, but they were able to wean him off the vent within 24 hours. It is such a relief to see him breathing easily!

anthony2

More updates coming soon…

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Plan B

It seems that Anthony is unable to tolerate anything in his stomach without reflux causing stomach contents up to the back of his throat. Anthony has a very strong cough, which is good for clearing his lungs, however when he coughs, this also pushes his stomach contents up to his airway, which causes more coughing – it’s a vicious cycle. Even on an empty stomach, the stomach still has acids and any saliva that Anthony swallows, so his stomach is never really empty. We tried attaching a bag to the G-tube port (stomach port) to allow his stomach to empty. With this drainage bag, when he coughs, the acids go into the bag rather than up to his airway. We were feeding him via the J-tube and not seeing any formula in his stomach drainage. This approach was working great and we were up to 40cc/hour (with a goal of 50cc/hour).

Unfortunately, Anthony vomited about a week ago and the vomiting seems to have displaced the tube. We are now getting formula in his G-tube drainage. Basically, some of the formula is going in and then out again. This will not do. It seems the shorter GD-tube will not stay in place, plus considering the difficulty placing this type of tube, we have decided to go with a surgical J-tube.

So, Anthony will have two separate tubes, a G-tube to keep his stomach empty and a J-tube for feeding. The J-tube will be place beyond the site of his vulvulas surgery. Another advantage to this type of tube is that once Anthony is completely healed from this surgery, I’ll be able to change or replace both tubes myself, without having to go to the hospital. This is a big plus to me.

Anthony is scheduled to be admitted to the hospital on January 31st for pre-op testing and bowel prep. Surgery will be on Tuesday Feb. 1st and if all goes well he will be discharged on Wednesday or Thursday. He will continue on TPN via the PICC line until we are able to get enough calories into him via the new J-tube. We are optimistic that this procedure will work for Anthony and we can get him off the TPN and back to school.

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Update on Anthony

Anthony had a rough time this past winter. He seemed to pick up every cold that went around and also had increased problems with gastric reflux (stomach content backing up into his esophagus). At times the reflux was so bad that you could see the Pediasure bubbling up in the back of his throat. Add to this Anthony’s neurological impairment, muscle weakness, cognitive and positioning problems and you have a recipe for disaster. Reflux in children like Anthony often leads to aspiration pneumonia and even death.

After trying a few medications with minimal improvement, we were left with a couple of options. First is a procedure called a nissen fundoplication, a surgery in which part of the stomach is wrapped around the lower end of the esophagus and stitched in place. This tightens the sphincter between the stomach and esophagus to prevent stomach content from backing up. Anthony had this procedure when he was young (before he joined our family). Because he had already had the surgery once, he probably has a lot of scar tissue in that area, which would make the surgery more difficult.

Nissen fundoplication
Nissen fundoplication

Another less invasive option is to try a GJ-tube (Gastrojejunal tube). Anthony already has a g-tube or gastrostomy tube (feeding tube into the stomach). So we decided to convert his G-tube to a GJ-tube. Anthony had the G-tube to GJ-tube conversion Wednesday (June 30, 2010). Using x-ray images for guidance, a radiologist threaded a long feeding catheter into the current g-tube site, through the stomach and into his small bowel. By feeding Anthony directly into the small intestine, this should greatly reduce the chances of reflux and aspiration. It took almost 2 hours to get the correct placement of the tube, but he tolerated the procedure well and so far he is tolerating his feedings.

diagram
Diagram shows placement of GJ-tube, through the stomach and into the small intestine.
tube
This is what the tube looks like. It's a triple lumen tube, one port goes to the stomach, one goes to the intestine and the 3rd is to fill the balloon which helps to keep the tube secure.
xray
Xray used to help guide the tube into the small intestine. (The rods and wires are from Anthony's spinal fusion)
Anthony being cooperative as usual. No sedation needed.

The disadvantage to feeding directly into the small intestine is that feedings have to be delivered slowly. Unlike the stomach – which is a pouch to hold food – the small intestine doesn’t have any storage space, so feedings have to run very slowly. Basically, Anthony will be fed 24/7 in order to deliver enough calories. Also, if this tube gets displaced, plugged or pulled out or when it needs to be replaced (every couple of months or so) this will involve going to the hospital. With the g-tube, I was able to change the tube myself at home. However, these disadvantages are minor if this new tube prevents aspiration.

Hopefully Anthony will have a healthy summer and we can get enough calories into him so that he will gain some weight. He is out of school for the summer, but we are hoping to have him strong enough to return to school in September.

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Anthony’s Progress

Anthony continues to make wonderful progress! He no longer needs any pain medication and his incision is pretty much healed. One interesting problem that has come up, his reflux is much worse after the surgery. I assume this is because his posture is so different now or maybe his fundoplication loosened a bit. Fundoplication is a surgery he had years ago to prevent reflux.

Fundoplication: the part of the stomach that is closest to the entry of the esophagus (the fundus of the stomach) is gathered, wrapped, and sutured around the lower end of the esophagus and the lower esophageal sphincter. (The gathering and suturing of one tissue to another is called plication.) This procedure increases the pressure at the lower end of the esophagus and reduces acid reflux.

The surgeon said this problem is common after a spinal fusion. I will ask her more about it when Anthony has his follow-up appointment on November 2nd. In the meantime, he has been started on Zantac twice a day.

Yesterday, a bunch of Anthony’s teachers came to visit him! Anthony was so happy to see them all!

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