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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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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What a week

Aug 09 2009 Leave a Comment

Since I wrote last Will has gone from eating ~30 oz a day to eating 15-20 oz per day. Needless to say it has been a long week. Wednesday was the worst. He would drink 2 oz of his 6 oz bottle then stop and cry, not taking any more. After every feeding I was in tears and spent lots of time on the phone with Jim and the pediatrician, because I was 800 miles from home finishing up a visit with my parents. There were several points during the day that I just wanted to go jump on a plane and take the boys home, hoping that would fix it. It was actually really good that I was there, because my mom and sister just took over watching Jack and would take Will from me once I stopped feeding him so I could cry and make phone calls.

All I could think was why is he going from eating 6 oz a feeding to eating 2 oz in 2 days? It wasn’t making sense to me that it was just reflux. I am pretty sure that reflux was partially involved, but usually it is a much slower for them to work down that much volume. Finally I decided to take his temperature, just to see. Well he had a low grade fever and had been having looser poops. So now we think he is sick, but what can we do, it is Wednesday evening and we don’t fly home until Friday afternoon. After being reassured by our fabulous pediatrician that he wasn’t in any immediate danger of becoming dehydrated with a couple of low volume days we made an appointment for late Friday just to check.

Thursday and Friday were better eating days that Wednesday, but not at all normal days. His mild fever was down, but he was still crying and fussing through the feedings. We were able to make a desperate enough case that GI at Children’s Hospital has agreed to see us next week and it is a doctor that we know. He performed Jack’s G-tube placement surgery. Hopefully he will have some insight next week.

We made it home Friday, without to many issues on the airplane (just a red Tylenol spit-up and some normal Will fussing), to get to the pediatrician (not our normal one, but one in her office). She checked him out and didn’t see anything really obvious, but said that there was a bug going around and he could have a sore throat that she just couldn’t see. At least we are home and will get to see our pediatrician on Monday and GI on Wednesday. Hopefully we can start to get this figured out.

Filed Under: GI, Jackson, William Tagged With: , ,