Follow-up GI appointment

Sep 05 2009 1 Comment

Yesterday Will had his GI follow-up appointment with Dr. Burpee at Seattle Children’s. The test results for the pH probe, Upper GI and Endoscopy were all normal. He had 31 episodes of reflux detected by the pH probe during the 24 hour period. One of them lasted a minute, but none longer than that. His Upper GI should normal anatomy, with no twists or other issues. The biopsies from the Endoscopy were all normal, except one in his stomach which showed minor irritation. Dr. Burpee said that about 40% of the time they get one of those results and it was nothing to worry about.

 Since we started thickening Will’s formula he has been eating better. He is still not back up where he was, but now he is eating around 24 oz per day. He is much happier during the feedings and eats smoother usually. (Fingers crossed I am not jinxing anything by actually writing this down). We are trying a few solids too, but so far he is slow to take to it.

Dr. Burpee wanted us to decrease his medicines, but we aren’t ready for that yet. Things are leveling out for us after our eventful summer and it is nice to have things working again. We agreed that when we were comfortable that we would first stop the Zantac and then later decrease the Prevacid. We are going to go see him again in 3 months. He is a very nice doctor and reasonable about us not wanting to monkey with anything right now.

So fingers crossed we keep his feedings going fine and can working on introducing some solids in the next month or so. I can’t wait to see blueberries all over those cheeks.

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Two busy days

Aug 19 2009 Leave a Comment

Yesterday morning we left our house for Seattle Children’s Hospital and returned home this afternoon after an endoscopy, pH probe, upper GI and appointment with a feeding specialist. It was a busy two days and we are all very tired. Needless to say you don’t get much sleep when you are in a hospital, but add on to that sharing a room with a family who has an infant and there is even less. Yes, they double up infants. It doesn’t make sense to me either, but that is how it works. Will was able to sleep through the night with everything going on: another baby in the room, nurses in and out checking his vitals every four hours and our roommate’s TV on all night. He is a little super star.

He started off with an endoscopy yesterday morning at 8:45. For this procedure they put him to sleep and then stick a camera down his throat to look at his esophagus, stomach and upper small intestines. They also take tissue samples in all the areas to make sure there isn’t anything going on that they can’t assess visually. The doctor came out with photos (Jim joked that we should frame Jack’s and Will’s next to each other and play pick out your stomach) and said that everything looked normal. He didn’t see any signs of irritation or concern. The tissue sample results will be back in 1-2 weeks.

While they were finishing up the endoscopy they place the pH probe for the 24 hour observation period. It is a probe on the end of a thin tube that sits in his esophagus and measures the pH. If there is any acid left in Will’s tummy when he refluxes or spits up it will register a lower pH. I kept notes on when I he eats, sleeps, spits up, or has any signs of distress. We had to stay at the hospital overnight while it was in, just in case he pulls it out then they can put it right back in.

This morning we did the upper GI, which looks at the anatomy of his esophagus, stomach and upper small intestine. They feed him a bottle barium solution (flavored with cherry syrup) and watch on a fluoroscope as it flows down to his stomach. Pictures are taken every so often, as he is moved into different positions (left side, stomach, right side). He didn’t really like this one very much. All of his anatomy looked normal, so that is good.

The last thing we did today was meet with our feeding specialist. We chatted for a bit and she watched Will feed. She suggested we start using Simply Thick to thicken his formula instead of rice cereal, because the cereal has been clogging the nipples. So far it seems to be working better. She also advised to let him tell us when he is finished feeding and for right now not to start solids. We will check in with her next week to see if we should come back over again.

Overall Will handled all that we have put him through like a champ. Even with all of this stuff he ate a bit better the last few days. The thickening formula seems to be helping, so fingers crossed it will keep getting better.

You may be wondering what Jack was doing during all this. Well we lucked out and had two wonderful people to stay with him, thanks guys. Yesterday my aunt Amy watched him in the morning. Jack got to go wake Riley up and show Amy what a good swimmer he is. Jim came home about lunch time and then they both came over to have dinner with Will and I at the hospital last night. Today Jack’s godfather Alan came over to play. They watched movie and played Hit and Run, one of Jack’s favorite backyard games.

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Doctors, procedures and appointments, Oh My!

Aug 12 2009 Leave a Comment

It has been a busy day so far. This morning we had our appointment with GI at Children’s Hospital and I would say it was productive. While he didn’t provide answers to all of our questions he did agree that scheduling some procedures to rule things out was a good idea. So here is William’s schedule for the next few weeks.

8/14 – Appointment with a 2nd GI doctor for a 2nd opinion (with the consent of our GI doc).

8/17 – Endoscopy at Children’s Hospital – yes he has to be put to sleep for this one, but we don’t have to stay overnight. They will stick a camera down his throat and see what they can in his esophagus, stomach and upper small intestines. They will take biopsies of tissue in all locations to make sure there isn’t anything going on.

8/18 – am – Upper GI study – William will have to drink the Barium bottle and then they watch the flow of the liquid down his esophagus and into his stomach and small intestines.
pm – 1st appointment with the Occupational Therapy (OTPT) feeding specialist at Children’s Hospital.

8/20 – Appointment with an eye doctor to make sure his eye movements are normal.

9/3 – Follow-up appointment with 1st GI doctor.

9/8 – Swallow study – to make sure Will is not aspirating his food as he eats.

Oh yah and Jack has a dentist appointment on Friday too.

All of this stuff may end up being overkill, but we just want to be thorough in ruling things out or finding something. With Jack we felt like we fiddled around and waited to long to do some of these things and it may have made a difference in his outcome. If Will ends up with a feeding tube after everything we just want to make sure that we tried all we could and in a timely fashion to try to head it off.

To give you an idea when we did stuff with Jack he had an Upper GI at 2.5 weeks old (that is how we discovered his reflux, because both boys are pretty much silent refluxers – meaning they don’t spit up a ton), a Swallow Study at 4 months old (3 months into feeding issues) and an Endoscopy at 6 months (he already had a feeding tube by this point).

All of these results may prove to be normal, but at least we will have ruled out that there is anything going on in his stomach and throat. Jack will get lots of use out of the new portable DVD player we got. I wonder what the favorite movie will be.

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