Jonathan's First Field Trip

Today was a pretty big day. In addition to Ethan getting his G-Tube removed (see post below), Jonathan had his first field trip at school today to a pumpkin farm.

The trip included a hay-bale maze, a petting zoo, a tractor ride, and picking out a pumpkin from the pumpkin patch. Jonathan, however, was interested in only getting a pumpkin from the patch and had no real interest in any of the other activities. In the end, he did say he did have fun (probably because he got his pumpkin!).

Searching for the best pumpkin....

I found my pumpkin!

Mommy wants a picture.

Ethan took a nap after all the excitement of the animals and a hay ride.

We got a treat at the farm...my first creamsicle!

- Bob/Dina

No More G-Tube!

Ethan got his G-Tube removed today! He had a scheduled appointment to see the general surgeon that inserted it for evaluation for removal. After a very quick discussion, the decision was basically: 1) remove it now, 2) remove it next week in general surgery. Option one had the benefit of getting it out now and not subjecting Ethan to anesthesia/intubation but the drawback was that the hole would be left to close up on it's own. This happens at differing rates for different people - some close that night, some close within 24 hours, some don't close and require surgery. The second option had the benefit of having the hole closed surgically but the drawback was going through anesthesia/intubation. Normally, this is considered an outpatient procedure but because Ethan has so many issues with anesthesia/intubation, the doctor thought it best to remove it now and try to avoid anesthesia. If it turns out surgery is ultimately required to close the hole we can at least say we tried our best to avoid surgery. Closing the hole is a simple procedure and can be done quickly (20 minute procedure) - but it will most likely mean another overnight stay for Ethan.

Removal was quick - but painful. As the doctor put it: the only risk of doing it now was that he would be very unhappy for a few minutes. They essentially just pulled it right out. He held his belly down with one hand, and yanked it out with the other. There was quick audible 'pop' followed by lots of crying. Ethan cried a lot - but was less hysterical than I expected. I expected the 'silent/I can't even catch my breath/followed by intense screaming' but that didn't happen - he just cried. After about 5-10 minutes, he had calmed down and by the time we got home, he was totally fine.

The hole should close within 24-48 hours. In the mean time, it will leak and we've been given gauze to cover it up in the mean time. The doctor did mention that if the hole doesn't completely close up on it's own after 48 hours, but the leakage appears to be getting to be less and less every day, then we should simply give it more time.

During the next 48 hours Ethan can eat/drink as he normally does. The only restriction is to not submerge the area (so no baths - but sponge bathing is OK).

This also means that barring a surgery to close the hole, Ethan is now done with all his procedures and surgeries for several years!

We have appointments in the first week of November to follow up with Ophthalmology (post-op visit) and to go over the sleep study results. After that, barring any unforeseen events, the next big thing in Ethan's life will be the start of eyeglasses and eye patching. This may not begin for a year or two still (we'll know more after our post-op appointment with Ophthalmology). Moreover, after these appointments, Ethan probably won't have any more Children's appointments until his next regular Cranialfacial followup which won't be until summer of 2011.

Another pleasant consequence is that we no longer need to rent the feeding pump (we've already called to make arrangements to have it picked up), nor do we need to have a regular supply of Elecare (the special (expensive) prescription formula that Ethan has been on) which means, ultimately, less future dealings with the mob, er, I mean the insurance company*.

- bob

*As a post script: we're still working on whittling down the amounts under contention with the crooks, oops - the insurance company. While the amount under contention is still about $1200, it's a far cry from the (7+)K it was a few months ago. Progress is slow but steady...

Things Looking Good For G-Tube Removal

Ethan had a regular followup with Nutrition at Children's as well as a second swallow study.

Nutrition really liked his weight gain (over 18 pounds now) and so this bodes very well for getting the G-Tube removed. We meet with the general surgeon (who inserted it) later this week and he will give his evaluation.

The swallow study was to rule out any physiological issues regarding Ethan's reluctance to eat solid/chunky/real food. The swallow study came through with no issues so the thought now is simply it's a texture issue - Ethan just doesn't like that stuff. So the plan is to slowly introduce the stuff into his diet. He will start with things that can be mashed (like yams, etc) and to gradually make them more chunky/solid over time so that eventually he just gets used to more solid stuff.

I know we have been remiss in pictures of the little guy since his eye surgery. Pictures should be forthcoming. At present, the redness around the sclera has diminished substantially but there still is a little bit. Pictures, once uploaded, will probably show more redness than there currently is (since they will probably be 1-2 weeks old).

- b

24 Hour Followup

As of 4:00PM today, we are all home.

After I picked up Jonathan from school this morning, we went down to Children's to visit and ended up staying the balance of Ethan's stay.

The bandages were removed this morning so the doctor could check everything out. They were very pleased with how things looked.

There is a discoloration of the iris where the dermoid used to be. It appears as an area of opaqueness. From a distance it is not noticeable but closer up, you can definitely see it. Apparently this is not so much the result of the what may still be left of the dermoid (in fact, there is very little left of the dermoid - you would probably need a microscope to see what cellular material may be left) but more a function of the way the dermoid formed and affected the layers of collagen that comprise the cornea. Hence, this opaqueness will never go away or get lighter. Still, it is a marked improvement over how it looked before the dermoid excision.

At our request, the doctor put the bandages back on and we will leave them on for another 24 hours and remove them ourselves sometime tomorrow. This is primarily due to my paranoia about letting the surgical site heal without any disturbance from Ethan rubbing the area. (The upper most layer of the cornea (I believe it is the corneal epithelium) regenerates within 24 hours and this is why I wanted to have the bandages put back on just to be on the safe side).

The part of the sclera where the dermoid was (the white part of the eye) is pretty bloodshot at the moment due to the surgery. This will subside in about 2 weeks.

We will have a followup with ophthalmology in one month. This will more or less coincide with our next visit with Nutrition and at that point we believe the decision will be made to leave or remove the G-Tube.

On another note, the anesthesiologist who presided over Ethan's surgery came to talk to Dina today on his day off because he felt it was important to explain what had happened during intibation. The intibation itself actually took about an hour and he had to call in two other anesthesiologists to assist. A scope was placed in through Ethan's nose in order for the doctors to see better and then a tube was also placed through his nose this time to intibate. The anesthesiologist drew Dina a picture of what he saw once they could see in his throat. The vocal chords form a triangular shape and all three sides should be visible. This was not the case in Ethan. Only two sides were visible. The other side was obstructed by extra throat tissue. Once the anesthesiologists had gotten the tube in his throat, the excess tissue kept closing up onto the tube causing the whole intibation process to stop. Once the tissue opened up again, the doctors were able to continue with the initibation. This is what made the process so long. The anesthesiologist felt that Ethan's intibation should have been easier than the intibation in June because he is bigger, but that turned out not to be the case. He warned us that we need to tell any anesthesiologists of Ethan's difficult intibations should he need any further surgery at another hospital in the future. The anesthesiologist also feels that the next intibation Ethan has in 5-7 years should be easier.

It is just speculation at this point, but the extra throat tissue could be causing some of Ethan's breathing and/or swallowing difficulties. The anesthesiologist is going to talk to Ethan's main Craniofacial doctor and his Ear, Nose, and Throat doctor about what he observed during the surgery.

- bob

Surgery Day (III)

Ethan's surgery to remove the epibulbar dermoid was today. According to the ophthalmologist, all went well and there were no surprises during the procedure. The entire procedure was scheduled for 45 minutes. This includes time to sedate, intubate, and the actual procedure itself. It actually took over 2 hours (over 3 hours if you include the fact that they were running about 1 hour behind schedule). Apparently it took 1.5 hours just to intubate him. The anesthesiologist has yet to talk to Dina to discuss what issues/problems they had (I am staying at home with Jonathan and Dina spent the night with Ethan during his sleep study last night and will be staying overnight at Children's with Ethan tonight).

It's a good thing that this is most likely the last surgery for a few (several?) years (when they will address the jaw) as each successive surgery seems to come with more and more issues during intubation.

The ophthalmologist says that it looks much better now that the dermoid has been removed but we won't see the results for ourselves until sometime tomorrow when the bandages will be removed.

We won't know the results of the sleep study for quite some time (possibly up to 2 weeks or more) but it seems that they got a good study (i.e. enough good quality data) and that we won't have to come back and repeat it.

Ethan back in the room after surgery.

Ethan will all the sensors strapped to him for the sleep study.

- bob

The On Again Off Again Sleep Study

Is now on again. However, it will be done the night before Ethan's surgery at the Bellevue location. So this means the morning after the sleep study, it's (a hopefully quick) checkout and then get to the Seattle location to check in for surgery. Could possibly make for a hectic day.

- bob

Sleep Study Is A No Go

It appears that they cannot schedule the sleep study for the night before the surgery. This is kind of annoying as it means two separate over night stays at Children's. Since the sleep study is not of high importance, we'll schedule it for some time when we feel it's convenient.

- bob