Asher Endoscopy and pH Probe

Asher with pH Probe	Asher in Jail

Asher had his Endoscopy and a pH Probe yesterday. We'll get results on Wednesday.

(we'll edit this post with more info later...)

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It's Liz writing. I've been struggling for days with what to say about Asher's endoscopy and pH Probe. My first thought is to make it short and succinct. That thought is quickly followed by the thought to give more information for folks who may be surfing into this blog who are going to have to go through this stuff with their own child.

In some ways it was like running a marathon. Some parts were tough, but if you can stick with it, you'll make it to the finish line. Good golly, I can't tell you how many times I wanted to quit during that 24 hours. Seeing Asher suffer so much at some points really got to me. But we did prevail and made it to the 24 hour mark and now we have the data we need to know what's going on in that adorable little body of his.

So, without further ado, here goes:

The endoscopy experience was a little weird, but over with quickly. The anthesiologist was a bit lackadaisical about Asher's weight (do they not need to get his weight right for the anesthesia?), the doctor was a bit lackadaisical about getting into the room and preparing for the endoscopy, and it must have taken the Dr. a total of 5 minutes to do the actual procedure. I guess that although it's a big deal for us; it's routine for them. What's important is that we got the look and the biopsies and that Asher did fine. We'll get the results of the endoscopy on Wednesday and plan a course of action from there.

Next, the pH probe: nurse Fay inserted the probe while Asher was under anesthesia. They also taped Asher's arms to boards -- from his armpits to his fingers -- so that he wouldn't be able to pull out the pH probe.

Poor Asher, he came out from anesthesia and couldn't move his arms and was hungry and mad. Anyone seen the movie, "The Incredibles"? If so, think of Jack-Jack at the very end of the movie. Asher was so mad, I thought he'd burst into flame.

The nurse wouldn't let him eat or drink anything until they properly placed the pH probe using x-ray. I'm a big planner, so the rest of the pH probe placement drove me absolutely nuts. The nurse waited until Asher was ready to be discharged from recovery to call x-ray and have the probe placed properly. When Asher was ready for discharge, she was hard to find. Meanwhile, Asher was crying because he was hungry. Faye returned and called x-ray. Then we had to wait for x-ray to get ready. Meanwhile, Asher is screaming mad and really hungry and I wasn't allowed to feed him.

Finally, we get into x-ray. We put our precious baby in a foam basin (it keeps him in place during the x-ray) and we're told to stand behind the glass because it will only take "2 seconds" to place the probe. Minutes later, we're still waiting. Asher is crying hysterically and I'm ready to scoop him up and take him out of there. The test just about stopped before the probe was even in place! I think that was the worst part of the entire 24 hours.

After the probe was placed, we were allowed to offer Asher a bottle. He took one sip, felt the probe down his throat and started to cry. He took another sip and did the same thing. Then he cried and cried because he was hungry and there was some horrible thing going down the back of his throat. Asher cried and cried for hours. He cried so hard he became hoarse. Again, I doubted we could make it the entire 24 hours.

At about 6 PM, Asher drank his bottle. By this time he was so hungry that he drank the entire 8 oz in less than 4 minutes! Then he promptly vomited it right back up again. I was glad the nurse suggested I bring a change of clothes! I cleaned us up and changed us both and gave Asher a few extra ounces of bottle. He stopped crying and was a bit less cranky.

Asher vomited 3 or 4 more times during the night. We both ran out of clothes to wear and started to wear hospital gowns. I got about an hour sleep; Asher got about 5 hours of sleep. We did manage to get through the night. By the time 8 AM rolled around (Nurse Faye mentioned that she and Dr. Ulshen would return to remove the pH probe between 8 and 9 AM), we were doing the victory dance. We made it!!!

Poor Asher was completely traumatized by strangers. Anytime anyone came into our room he cried, turned away from them, and clung to me like crazy. I hope he forgets this experience quickly.

Next step....patiently await the results....

Asher Update

Asher's endoscopy and pH Probe is scheduled for Thursday, April 28 and 29th. We have to be at the hospital at 8 AM Thursday. The endoscopy itself will happen at 9 AM - right after they put him under general anesthesia. After the endoscopy, they'll insert the pH Probe, do an x-ray to get perfect positioning, then bring him to the recovery room and allow him to wake up from the anesthesia. Then, we'll move to a hospital room for the next 24 hours while he has the pH Probe in place. The plan is to remove the probe at 9 AM on Friday, April 29th. Then we get to go home and recuperate.

The probe itself will be inserted through Asher's nose and into his esophagus. By measuring the acid that may be splashing into his esophagus, it will tell us if he still has reflux and, if so, how much and when he's refluxing. We then use that information to guide us in our next course of action.

They'll have to put mitts on Asher's cute little hands while the probe is in place. Since it's irritating, he'll try to pull out the probe. We get to entertain him for the 24 hours that the probe is in place so that he doesn't try to pull it out.

In preparation for Asher's pH Probe, we have had to stop giving him the medicine we've been giving him. First we had to remove the Prevacid. Today we had to stop the Reglan and Erythromycin.

Interestingly, his eating has both taken a nose dive AND improved. He's eating table food at school, but he refuses any sort of solid food at home. Plus, today and yesterday he seems to have a lot more energy and seems to be a lot happier -- at least at school. At home he's the same ol' adorable Asher.

This is really one of those times where I wish the "vulcan mind-meld" was a real thing - where we can go into Asher's adorable brain and figure out exactly what is going on with him. Guessing is REALLY hard.

So, please wish that time goes fast for us - that Friday comes quickly, and that we get some answers on what really is going on in that adorable little belly.

Asher Update

We took Asher to UNC Pediatric Gastroenterology today for a second opinion. He's nearly 19 months old and eats only stage 2 purees and a bottle and continually vomits and we're desperately searching for a way to get him better.

It was an interesting appointment.

The Dr. listed the four possible issues that could be the cause of Asher's problem:

1. Structural: something didn't form right when he was in the womb.
2. Reflux: That spincter muscle in his stomach just isn't doing its job.
3. Allergic: This is that esosiniphial esophagitis thing I mentioned earlier.
4. Delayed gastric emptying: Where his stomach doesn't empty as quickly as it should.

We've tested for items 1 and 4. Structurally, all his parts are in the right place and they all tilt the right way. His stomach empties just fine, although two of his medicines are to make his stomach empty faster anyway (because it makes him vomit less). That leaves reflux and allergy.

Asher had an endoscopy in June 2004 that revealed inflammation due to reflux, so that's the likely culprit. Thing is, we're already treating him for reflux. The only other treatment is surgery, which has several complications a large percent of the time. Deep heavy sigh.

The Dr. suggested doing a second endoscopy to rule out item 3, because if it is that, then it's a different treatment. He also suggested doing a pH Probe, which is the definitive test for reflux. Although we're already treating for reflux, testing for it would give us the answer - definitively - if that's what's going on in Asher's adorable little stomach.

So, our second opinion confirmed our original doctor. I guess that's good.

The Dr. also told us that he sees cases like Asher regularly and we should get used to this because it's going to be our way of life forever. Deep, deep heavy sigh.

I guess there are worse things. We can teach him how to feed himself his stage 2 purees. I can get him proper nutrition via liquid and puree. His weight is fine, so he's getting calorically. And I don't have to give up searching for a cure for him....

Which leads me to the next step: endoscopy and pH Probe. We had already scheduled these tests at Duke, so we're going to move forward with them. They're scheduled for next Thursday and Friday, April 28th(?). Asher will be admitted to the hospital. They'll put him under general anesthesia, do the endoscopy and insert the pH Probe. Then we'll hang out in a little room for 24 hours and let the pH Probe do its reading. On Friday at about 9 AM, they'll remove the PHprobe and we'll get to go home.

Deep, deep, deep heavy sigh....

Verbal Asher

While Simi accomplishes his literary skills, Asher is accomplishing his own communication skills. Asher is learning to talk. He is also very proud to show anyone (well, not just ANYONE, it has to be someone he KNOWS and TRUSTS) his eyes, ears, nose (while he sticks his finger IN his nose), mouth (which he lovingly refers to as his "mouff"), and then he lifts his shirt and says, "belly" (or a word that resembles that word). The last item is said while he sticks his finger in his bellybutton and with a very proud smile on his face. If encouraged, Asher will also point down to his feet and proudly say, "toe".

Today he began saying words that have "s" in them. My guess is the day he begins saying, "Simi" is very close.

Reader Simi

OK, proud parent boast here: my son, who has not yet turned 3 1/2, is reading!!! I'm so proud of my little reader!!! We write a simple word on the Magna Doodle and Simi sounds it out and shouts out the word. WOW!! Simi absolutely loves this game and he keeps asking to play it again and again. Raj is great at thinking up words to write. My little reader!

Liz learning to add photos

Simi and Alex	Asher the clown

Thought y'all might enjoy some recent photos of the boys. The first is of Simi and his friend Alex at fútbol practice. The second is of Asher with a half of a plastic Easter egg on his nose. We played with these eggs a lot this season and Asher had a great time making us all laugh when he put the egg on his nose. That Asher is such a clown! Every time I see this photo, I burst into laughter.

These photos are a poor substitute for the real thing; the boys are so much cuter than their photos reveal!

Click on the photos for a slightly larger image.