SO SORRY I haven't been keeping the world updated on what has been going on in the little ninja world! Although I haven't been posting, we have been busy. Where I last left off we were still in the hospital and had just replaced Easton's broken tube, then formula starting pouring out of the wrong tube. If you want to recap, check out the last post!
Before I begin, I would just like to thank all those who support us. We could not do it with out you! Also, a huge HUGE shout out to the ICC nurses at Children's. You not only take great care of Easton but also care about me as well. You are all amazing!
May 22nd-25th
The rest of this hospital stay was complicated and a bit tricky to explain but I will do my best! As you may know, Easton has a G/J tube. This means that he has a wide g tube that runs just into his stomach. His J tube, which is small and skinny, runs THROUGH the g tube but continues on through the stomach, past his pylorus (the valve in between your stomach and intestines), and into his jejunum (aka small intestines). Anything that goes into your intestines/jejunum should not come back to the stomach or be refluxed/vomited. So, things that go IN to the J tube definitely should not come OUT the G tube! However, formula was going into his J tube, and coming out his G tube!
In know, all very confusing. It gets a little more confusing though.
They check j tube placement by taking pictures under x ray. The slowly push dye through the tube so they can see where the tube is and liquid is flowing. After further examination, it seemed that while the tip of the J tube was past the pylorus, it was not far enough in. The last few inches of the J tube must also be past the pylorus. The last few inches of a j tube is covered in holes to allow a more gradual release of formula. Think of a sprinkler instead of a hose.
So they advanced the J tube further into his intestines, slowly restarted J tube feedings. By that night, *BOOM*, formula is again coming out of the G tube. (reminder, this shouldn't happen!)
So, the next morning they recheck J tube placement... yet again... but in is in the right place. They advanced it further into the intestines to be extra safe, but formula was still coming back. We then have to consider the fact that this may not be a tube issue, but a poor gut motility issue.
Next step is to try the antibiotic called erythromycin. In low doses, this antibiotic can be used to stimulate digestion and keep things moving in the right directions.
After a day on this, we were able to go home!!
HOME
We got home Friday night around 5pm. Going home was not all roses and rainbows though. By the time we got home, Easton's tube site looked nasty. It was INFLAMED and red. Above his site, there was a big lump that was hard and painful. Poor boy looked like he had a huge ball in his tummy. It was pushing up on his tube at a wacky angle. We tried ice, heat, a bath, baby Tylenol. With nothing working, we headed into the ER.
There they looked and agreed something was majorly wrong. They did an ultrasound of his tummy to check for an abscess. They didn't see and abscess and decided it was an infection of his site. We went on amoxicillin and went home! HOME at last (around 3am).
Saturday we went and had a fun day at the campground and Sunday Easton was baptized!!
And then Tuesday rolled around...
Tuesday Easton threw up 7 times. A lot.
(Remember, he is fed past his stomach. He really shouldn't have much to throw up)
We called the doctor and said to give him some time to make sure it wasn't just a stomach bug.
It wasn't.
Friday rolled around and he was still puking. We went to see our pediatrician and he had lost more weight. We had to drive to children's again.
June 1st-5th
We arrived at Children's Minneapolis again Friday afternoon. They stopped his feeds and put in an IV. Previously Easton has IV's in his hands and his feet (his foot IV lasted less than an hour because he is a kicker). They decided to out his IV this time in his head. I know... sounds crazy, gross, sad... I'm aware. However, it was AMAZING. 10/10 would ask for the noggin' IV again! It lasted our whole 5 day stay. He couldn't reach it to pull it out. He really didn't even notice it. He also could play with his hands and suck his fingers still, amazing!
Anyways, stopped his tube feedings over night. In the morning (Saturday). We went to radiology for the billionth time and checked his J tube placement. It was correct, so we had to reevaluate why all of this was happening.
One big red flag was what was backing up into his Farrell bag. A Farrell bag connects to his G tube and acts as almost a second stomach. Instead of puking, the stomach contents *should* come out into the Farrell bag. When there is enough pressure or if the vomit is not due to stomach contents it is able to vomit and reflux still. The cool thing is it a two way bag. What comes out into the bag is able to eventually go back into the stomach as the body can handle and absorb. It is a give and take. Easton's Farrell bag was filling with ounces upon ounces of formula, stomach acid, and BILE. Bile, is made in the liver and used to digest foods in the intestines. It should not be in the stomach.
Essentially, Easton wasn't digesting.
He also wasn't eventually reabsorbing everything he was pushing out into his bag, it was just sitting. This can cause dehydration as well as electrolyte imbalances. These contents are also very important when it comes to gaining weight, which we know Easton needs all the helps he can get!
We are trialing a new formula called Elecare. It is a special formula used for Infants with severe GI issues. We are giving this formula a 3 week trial. We also are upping his dose of erythromycin to 4 times a day in order to aid in his digestion. We will see how this plays out.
So far, we have not had any issues!
Upcoming
On June 20th we have his Mickey Button Surgery, granted he continues to gain weight. He will also have and MRI and CT scan that day as well. We are currently waiting on the results on some blood tests involving CMV.
Easton is doing amazing through all of this! He is loving to play and discover new things. His hand control is progressing everyday! He can now pass things between his hands and bring objects to his mouth (if his aim is right, we have poked our eye a couple times!) He is soooo close to rolling over! A few teeth are trying to make an appearance and will soon. He is still very little, just needs to pack on the pounds.
11lbs 3oz
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