New Surgery Date

Ethan's new surgery date is 3/2/11.

He has recovered from his cold and has entered into 'quarantine' mode. We do *not* want to reschedule this surgery again!

- b

Surgery Postponed

Ethan's surgery to close the G-Tube hole has been postponed. Ethan caught a cold. We will hopefully have a new date 2-3 weeks out from here.

- bob

The G-Tube Strikes Back

It turns out that Ethan's G-Tube hole has not healed. It seemed to heal quite nicely all the way up to when Ethan got violently ill in December. When he came down with the flu/Norwalk virus, he spent about 24 hours constantly vomiting. Apparently, the intense pressure this placed on his stomach basically reopened the hole. (Ethan did have his flu shot this year so if it was a flu, it was a different strain).

We took Ethan in to Children's to have them look at the hole just before Christmas. Their feeling was to give it another 6 weeks to see if it would re-heal.

It has not. In fact, as of now, it is leaking far more than it ever has ever since the G-Tube was first removed.

PASS clinic is scheduled for this coming Friday (early afternoon) and the surgery to close the hole is scheduled for this coming Tuesday (1/25/11, time: TBD). The surgery itself is a short 20 minute outpatient procedure, but due to past issues Ethan has had with intubation, he will most likely spend the night at Children's for observation. He should be home the next day (Wed., 1/26/11). Our M.O. for this will be the same: I will stay home with Jonathan, and Dina will stay at Children's with Ethan over night.

- bob

Ophthalmology Post-Op Visit

Ethan had his Ophthalmology post-op visit today. The doctor was very pleased with how his eye looks (again, apologies for lack of pictures to date).

Patching and eyeglasses most likely will not start until he is between 2-3 years of age. The doctor said to come back in 6 months and they will administer another eye exam just to see how his vision is coming along and I suppose at that point we will begin to discuss the plan for starting patching and glasses.

The doctor felt that there was little point in starting the patching and glasses now as Ethan would probably just rip them (patch and/or glasses) off anyway and given where he is developmentally with regard to his visual acuity, there would be little benefit (he is still of the age where his lack of visual acuity outweighs the effect of his astigmatism).

We also had a visit from General Surgery to examine how his G-Tube hole is coming along. They were also very pleased with his progress. There still seems to be a very small hole (when we change the dressing, there is still a tiny dot on it) so they said to simply give it more time (up to one month more). If at that point, it still has not closed up completely, then surgery would be required to close it up - but since the hole is so small, there is no urgency to the surgery and it could be done at any time/at our discretion. At this point, he is also OK to be submerged so regular bathing (as opposed to sponge baths) and trips to the pool are OK.

On Thursday we have another appointment (hopefully last one until next summer?) to discuss the results of his sleep study. Given that it has been about a month since the study was done and we have heard nothing I am going on the assumption that there is no real bad news there (the doctor did say he expected the results to be abnormal but not horrendous so I'm sure there will be some issues to be discussed but nothing terribly serious).

- bob

96 Hours Later

Ethan's G-Tube hole seems to be coming along very nicely. When we changed the dressing last night, there was barely any leakage at all.

We were told that sometimes these holes heal from the inside out. On the outside, you can still see a small hole (which appears to be somewhat scabbed over) but since there is very little to no leakage, we assume this is what is happening.

On the other hand, Ethan came down with a cold and the cough turned pretty bad sounding as of yesterday so Dina took him to the doctor. The poor little guy now has an ear infection and possibly the beginnings of a sinus infection. Hopefully his antibiotics won't taste too bad...

- bob

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

Ophthalmology Pre-Op Visit

Ethan had an appointment with Ophthalmology at Children's on Monday (8/23/10). This was essentially the pre-op visit. They determined the dermoid was highly elevated (e.g. sticking out as opposed to flush/flat to the eyeball) and if it is changing/growing, it is growing outward and not inward. This is very welcome news as it means it can simply be shaved off and it most likely will not be too deep - though this will not be known for certain until surgery day when the doctor begins the procedure.

The surgery date has not yet been finalized. We should hear back within a week. It will most likely be in October but we were told there is an outside chance it might even happen in September.

As far as Ophthalmology is concerned, it is a simple procedure and can be done on an outpatient basis. However, since Ethan has had a history of issues regarding intubation, the anesthesiologist may want to keep him overnight for observation as a precaution. In other words, whether or not Ethan comes home the same day or not is up to Anesthesia and not Ophthalmology.

The procedure itself most likely will only take 30 minutes but they said when you also factor in the time to get Ethan sedated, get the IV's in him, etc. - it will most likely be an hour to hour and a half.

We also met with Nutrition and if Ethan continues with his current feeding pattern, we may be able to get the G-Tube removed by October.

An interesting factoid from the "Huh? Umm, OK..." Dept.: the surgical schedule for Ophthalmology at Seattle Children's is handled/maintained by Urology. Right. Go figure...

- bob

And The Good News Keeps Rolling In

Another very good visit to Children's! This was Ethan's 2nd (and last) post-op for this surgery. His surgeon said he's healing up and coming along very nicely. It will take approximately 2 years for the scarring to finally settle down and heal. At that point, all the redness/pinkness/hardness should have finally disappeared.

We also met with Nutrition and his main Cranialfacial pediatrician. They are also very pleased with Ethan's progress.

As far as Nutrition is concerned, we are now devising a plan to slowly ween him off the bottle and on to 100% solids. The plan is to give him 3 meals a day of solids and alternate with bottle feedings in between, one first thing in the morning, and one just before bed time. We will be in touch with Nutrition in 2 weeks and then have another appointment to see them in August. They were all impressed that at this point almost nothing is going through the G-Tube and he is almost being fed 100% orally.

There is now talk of when to take the G-Tube out. G-Tubes in general have a very short lifespan and need to be replaced every 3-6 months. We are at that point now as his seems to be leaking - if you take the cap off (or as is the case with Ethan - he pulls it off or scrapes it open as he's crawling), it will leak somewhat. However, since he is doing so well with his oral feeding, the thought was to not replace the tube yet. We will simply leave it in for now (since we hardly use it) and save him the trouble of the replacement.

Replacing a G-Tube is a simple procedure that is done in clinic (i.e. no surgery required) - they simply pull out the old one and pop in a new one. However, it does take some force to pull out a G-Tube and I am sure it is about as enjoyable an experience as a swift hard boot to the head. It was felt that it was better to spare Ethan the experience and leave the old one in as it may be simply discarded within a few months anyway.

The criteria for removal is 2 months with absolutely no use of the G-Tube and no loss of weight or fall off in his growth trajectory. We are not there yet, but we are getting very, very close.

We are now not due for another appointment with his CF pediatrician for another 12-18 months - that's how well they felt Ethan is doing. The CF pediatrician will still of course be appraised of any other goings on (i.e. what Opthamology will have to say in August, if ear tubes are required (for drainage), when his dermoid surgery will be scheduled, etc.) but he felt he didn't need to actually see Ethan for over another year.

His plastic surgeon also said that there was no real need to see Ethan again until another 1-2 years. At that point it will be to simply evaluate how the scar is healing and to see if anything has changed in terms of his jaw development. His assessment at this point is that Ethan will be evaluated at age 7-8 to see if any surgery is required on the jaw. It is still quite possible that at that time, they will say that nothing needs to be done until adulthood.

One thing to note: because of the mandibular hypoplasia, Ethan will definitely have an overbite. How severe it will be and if any corrective measures are to be taken will be monitored and assessed primarily by his pediatric dentist.

We also discussed the possibility of speech therapy and any spinal issues (recall that Cranialfacial Microsomia patients can develop upper spine abnormalities). They felt that based on what they saw today, Ethan should have no need to see a speech therapist (however, it is something we will continually monitor and if required, he will be reassessed at 18 months). His spine looked fine and here too, they thought that there was very little risk of any bad surprises occurring.

So to sum up: Ethan is healing and recovering from surgery very, very well. The doctors are all pleased with his progress to the point that they don't feel the need to see him again for another year or more. The only things left on the near term horizon are the dermoid removal, the possible insertion of the ear tubes, and Nutrition's ongoing assessment to plan to get him off the bottle and get rid of the G-Tube.

- bob

The Evening After

It's been just over 24 hours since Ethan has come out of surgery and he already seems back to his normal self. Granted - this is also while on pain medications. But at least his pain is under control and he seems quite comfortable and quite himself.

As per the doctor - the muscles that were repaired around the lip in the surgery are already functioning. He actually already has a fairly strong suction on the binky. This bodes quite well for further progress on his oral feedings and with luck, we may yet be off the G-tube by the end of the year.

The overall bloatedness of the (now not so) little guy (due to all the fluids pumped into him during surgery) will take a few days to subside (i.e. several days for him to pee it all out). The swelling on the right side of his face (where the macrostomia repair took place) has increased as per what the doctor said would happen. This should disappear over the next few days on it's own.

- bob

Farewell, NG Tube. We hardly knew ye...

Well, that's not *exactly* true; we got to know the NG tube *quite* well, actually. But it's gone, and as the saying goes, "na na na na, na na na na, heeeeyyy, good bye!"

We had our regular Cranialfacial clinic today and the surgical nurse looked at Ethan's G-Tube/surgical site and said it looked really good and we could start using it (we were told originally Wednesday was the first day we could use it). So we did - right then and there (as he was due for a feeding at that time).

It was actually quite appropriate that Ethan himself had yanked out the NG tube just before we left for Children's. We decided to not put it back in just in case we got the go ahead to start using the G-Tube, and, well, there you go.

The clinical visit was very encouraging. His primary cranialfacial pediatrician was very nonchalant about everything - Ethan is progressing so well that he is not concerned about *anything*.

They had originally talked about bringing the surgical schedule in substantially (macrostomia repair in March, mandibular repair within the next 2 years) but since Ethan is doing so well and since his oral feedings improved so much recently, they felt the need to do this has now abated and we stick to our original surgical plan (macrostomia repair in May-ish and mandibular repair many years off). Normally, I would be very disappointed that the surgeries are being delayed, but in this instance, the reason behind delaying them is that everything is going so well. And in Ethan's case, the later, the better - as this gives him more time to grow and develop.

The mandibular repair is now pushed out to probably around 7 years of age. Another additional reason they were originally thinking to do the first surgery at 3-5 years (and then was subsequently brought in to 1-3 years) was to address his breathing/respiratory issues. But Ethan is improving here too - enough to the point that they do not want to do/risk such an invasive surgery so early. (The original thought was that if they lengthen the jaw, this would help open up his airway more by pushing the tongue and all related structures farther out). In addition, there is the very slight possibility (in Ethan's case, the doctors said it was highly unlikely but the possibility still exists (i.e. it is a non-zero probability event)) that there may be no jaw surgeries until he is 18 years old. They will simply continue to monitor him and see how his jaw affects his eating/breathing/speech and continually evaluate/re-evaluate. Like the doctors, I do not hold out a lot of hope for having no surgeries until age 18. Most likely, it will be around age 7. This also means that the CT scan scheduled for when he is knocked out during the macrostomia repair has been cancelled (which is good - less exposure to radiation over his lifetime).

Another upshot of this is that the G-tube may come out earlier now. We thought that it may stay for 2-3 years but with the jaw surgery now pushed out several years, they said they would not leave the G-tube in that long. The criteria for taking it out is Ethan must be 100% orally fed for 2 months with good growth trajectory during those 2 months and absolutely nothing going in the G-tube. If we can get there, and it is post-macrostomia repair, it is entirely possible we could lose the G-tube within a year. If we happen to get to the 2 month criteria *before* the macrostomia repair, they want to leave it in just in case his oral feedings fall off post-surgery.

They also commented that Ethan seems to be a little ahead of the curve in terms of his cognitive and motor development. The doctors were very impressed that he can already basically sit by himself (if only for a few moments) and that he is so alert and attentive. (Recall from (much) earlier posts that Cranialfacial Microsomia brings with it a 10%-15% chance of cognitive impairment). So this was very encouraging to hear.

So to sum up, as of 1/25/10, this is where we stand:
Ethan is doing very well in his growth and development. Next major surgery to excise the ear tags, fix the macrostomia, and clip his frenulum is back to around the May time frame. Next major surgery after that to address the epibulbar dermoid still remains around the September time frame. He is off the NG tube and strictly on the G-tube. If all goes well and he continues to make progress in oral feeding, we could lose the G-tube within a year. Their appraisal is that Ethan is doing so well, our next regular clinical visit won't be for another 2-3 months.

The general prognosis, in the doctor's own words: "Ethan is in the clear now". There was originally concern for his growth trajectory (since he was such a poor oral feeder) as well as his respiratory issues. But he seems to have gotten over the hump (like achieving the necessary activation energy, to borrow an analogy from chemistry) and things are going very well now. As they put it, moving forward, there should be very few (if any) surprises and any issues that follow will be expected (he may need his tonsils and adenoids removed by the time he is a toddler, he will probably need braces, etc).

The only other thing to note: the doctor noted that Ethan's dermoid seemed to be thicker. Ophthalmology mentioned that the dermoid should not change it's characteristics in any way moving forward. We expect to hear back to see if ophthalmology wants to evaluate this. If they do, regardless of what they find (if anything) we do *not* anticipate this will change the surgery date to remove the dermoid.

In all, it was a *very* good day and we are 3 for 3 for good news. Now if only the markets would deliver such good news on a reliable basis... (for those of you who might be interested at all, yours truly is scared enough of those idiots in Washington and what they may or may not do (i.e. actually *not* reappoint Bernake) that I purchased March 100 SPY puts as protection - yes I'm that worried...).

- bob

One down...

The G-tube surgery went well and was uneventful. The procedure was scheduled for 45 minutes and by my clock, it was almost bang on. Ethan spent most of the day sleeping but he had periods of wakefulness and when he wasn't being messed around with by nurses, was actually very calm during those periods. (When he *was* being messed around with - he was pretty pissed off - but I would expect no less from my son!).

No feedings of any type (oral or NG) are allowed until tomorrow morning when they will evaluate him. Until then he is on IVs. If he's doing well, he could be discharged as early as tomorrow afternoon. We, however, are not banking on this and figure it will be Friday or Saturday before he can come home. They would prefer that he can also feed orally so that he can take his pain medications orally.

We are also scheduled for a regular Cranialfacial clinic on Monday where we will be instructed on care, cleaning, use of the G-tube and we will also meet with the plastic surgeon regarding the macrostomia repair, frenulum, and ear tag excision. By my estimation, this means we are still on track for a March surgery date.

- bob

T-60 Hours (Give Or Take)

We are on for Ethan's G-Tube procedure (and first (of many to come) surgeries) on Wed. (1/20/10). Pre-op meeting on Thursday was uneventful (thankfully!) - basically to make sure we're all on the same page, what to expect that day, general risks of surgery, general risks of this particular procedure, etc. The procedure itself is scheduled to be about 45 minutes.

Ethan is scheduled for a 2 night stay. Could go longer, could be shorter. All depends on when he starts feeding regularly again after coming out of surgery.

Barring anything unforeseen, this means we lose the NG Tube by 1/27/10 (good riddance!). They want to go a week before actually using the G-Tube.

- b

Happy Birthday Jonathan!

Yesterday was Jonathan's birthday. We went out to Red Robin after church with extended family. Everyone came to church and then went out to lunch with us. Jonathan had a GREAT time! He got a lot of Thomas the Trains and Cars figures. What 3 year old boy doesn't love trains and cars. He was in heaven! He got to open presents before lunch, during lunch, and after lunch. As parents, it is so fun to see how much fun Jonathan was having. It was obvious how excited he was. He named every train as he opened them. Auntie Marie got a special treat: a great big smile when he opened her present. When we got home, he played with everything. He even got a Thomas puzzle from the Tsurus and put that together with daddy. Thank you so much to everyone for making Jonathan's birthday so special!

Ethan was also dedicated at church yesterday. He did very well. He stayed really quiet and calm the whole time and even let Pastor Mark hold him. He was very curious the whole time looking out at the congregation.

Latest news is that Ethan's G-Tube procedure is tentatively now scheduled for 1/20/10. We will know how real this date is later this week.

----------------------------------------------
*The Thomas The Tank Engine toys are, in my opinion, one of the most ingenious scams ever invented to be hoisted on unsuspecting parents. Not only do they have about 30,000 different engines/cars, they have "twins" - two engines that are exactly identical except for the name/number on them - and they sell them *separately*! And at between $15-$20 a pop - it is an absolutely insidious and at the same time ingenious scam. I only wish I thought of it first.

- bob and dina

2 For 2

We heard back from Children's. Ethan's cranialfacial pediatrician, the general surgeon, and the gastroenterologist all conferred and decided to go ahead with the straight forward G-tube insertion. No Nissen, no G-J tube - again good news. 2 for 2 so far...

They will get back to us regarding scheduling the surgery to insert the tube.

- bob

A Good Start To The New Year

The gastro enterologist left Dina a voicemail with the results. The results were surprisingly good. Ethan apparently has what is considered to be a normal amount of reflux for a typical 4 month old (actually, his results were on the high end of normal, but still within the "normal" range). Given this, he said he is even more reluctant now to suggest a Nissen but will consult with the other doctors (his primary (cranialfacial) pediatrician and the general surgeon (who would be doing the actual g-tube or any other related surgery)).

We have yet to actually discuss the results and a course of action with the doctors but this gives us hope that a straight forward g-tube insertion is the most likely plan of action.

This is probably the first bit of good news that didn't come with any caveats since he was born.

-bob

There Are No Straight Lines In Nature

They say there are no straight lines in nature. Pan's corollary: More so with Ethan.

We got back from Children's just now. This appointment was to assess the viability of the g-tube and true to form, it's not that simple with Ethan. While everything with his esophagus, stomach and basically his whole upper G-I checks out, it is unknown if Ethan *actually* has acid reflux. He has always been put on medications for it because it was assumed that he had it to some degree and he always seemed to do a little better while on the medication: but he has never actually been formally diagnosed with acid reflux. This has now become very important. G-tubes, once inserted, can cause acid reflux or aggravate an existing acid reflux condition. Since the whole point of inserting the g-tube is to make things generally better for him, if it will aggravate an existing acid reflux condition, then the simple g-tube insertion is no longer an option.

Ethan will undergo a 24 hour test (a ph probe) to monitor his esophagus and conclusively determine if he is indeed suffering from acid reflux and if so, to what degree. His appointment with ENT this coming Monday won't be conclusive or definitive enough. This test has yet to be scheduled (probably within the next two weeks) and will require an overnight stay in Children's. Results from the test should be forthcoming within the 24 hours following. From there, they can decide what they will do. If he has no acid reflux or it is not significant, they will go ahead with the simple g-tube insertion.

If the acid reflux is significant, then it gets quite a bit more complicated. There are a few options, none of which we find particularly attractive. The primary option is to then undergo a laparoscopic Nissen fundoplication (http://en.wikipedia.org/wiki/Nissen_fundoplication). The basic point of this is to create a one way valve to allow food to pass through to the stomach but prevent the acid from coming back up the esophagus. Then the g-tube can be inserted. However, side effects from this (there are many, actually: see the article) are that the stomach may initially not be able to empty as well as before and gas cannot travel back up the esophagus (so he can't burp anymore). So this means that the feeding patterns may need to change and he may need to be burped through his g-tube. The Nissen surgery is meant to be permanent. However, the stitches used in the procedure may come loose with time and if so, the acid reflux returns. Another option is to leave the ng-tube (what he has now) but thread it past the stomach directly into the small intestine. However, this is obviously something that can only be done at Children's and if we do this, and if Ethan should happen to pull out the tube, we *cannot* reinsert it - it means another trip to Children's to reinsert the tube. While this is an "option", I doubt it will be considered a viable option - since the whole point of the g-tube was to eliminate the ng-tube in the first place.

We were told that we should hear by Monday about when the ph probe will be scheduled for.

It just keeps going on and on... :-(

-bob


Throughout this whole journey with Ethan I have felt sad or stressed at times, but have really tried to find the positive in everything...something to be thankful for or something that has gone positively whether it be that Children's Hospital treats Ethan's condition and we don't have to fly anywhere, a successful feeding or passing a test. Any progress at all. Today was the first time (even with him being in the NICU at Evergreen, all the medically related appointments, or being admitted to Children's) that I felt frustrated and depressed...just generally down. I know Ethan's got the best docs, physical therapists, and nurses and i'm thankful that they are so thorough and take such good care of him...I guess i'm just frustrated that nothing has been as straight forward as I would like it to be. There always seems to be a few detours to get to the end of what we thought was a straight road and there are a lot of roads to travel still! I need to remind myself that God never gives you more than you can handle. Whenever Ethan looks at me with that little crooked smile, my heart melts and that reminds me that all this work is worth it! I also need to be thankful that Jonathan is healthy and is such an easy kid. He has put up with all of this and is such a good big brother!

-Dina

A Glimmer Of Hope

As of 12/01/09:

We just got back from another routine visit to Children's.

They are *very* pleased with his growth/weight gain. Overall, they are very pleased with him - how he looks, reacts/responds, his head control, his alertness - everything.

They will schedule some tests in a few weeks to determine what kind of g-tube to insert and which surgical procedure they will use. The tests are to confirm there are no problems with his stomach, or any surprises of any other type. He is also scheduled to go into Children's on 12/15 to see Othamalogy and ENT - mostly because those teams have not yet seen him. He will most likely get his g-tube inserted in Jan. They feel they could probably get it done before Christmas, but with us going up to Vancouver for Christmas (unless we somehow don't get Ethan's passport in time), I didn't want to go up and be away from Children's and have some unwanted surprises occur with it. While the g-tube is temporary, in Ethan's case, temporary means 1-3 years. Even if his oral feedings improve to where he can be fed 100% orally, they feel they will leave the g-tube in for a while since he will be undergoing surgeries that may interfere with his feeding (like the surgical repair to his mouth) so the g-tube gives them options to keep his feedings on track.

The surgery to repair his macrostomia will most likely be brought in to about March now. The doctors feel his oral feedings will not improve significantly until the macrostomia is repaired and they would like to bring that in by a couple of months if possible (as his doctor put it: "as soon as possible"). We meet with the plastic surgeon again in January and at that time he can give us better visibility as to the viablity of bringing in the surgical schedule - but after today's visit, the way they were talking - it seemed almost certain it will happen in March now. They would also like to bring in the surgical schedule for his mandible repair (if possible) - also because he feels that this would help his oral feeding significantly. So now instead of occuring at around 4-5 years of age, it might be anywhere between 1-3 years. Again, the plastic surgeon will need to assess this. What the current (very early plan) is that while he is out (sedated) for the macrostomia repair, they will also do a CT scan of his jaw so they can get a better understanding of what needs to be done and proceed down the right path. As the plastic surgeon put it today - there are several paths this could go so it all depends on what is there to work with and what is there developmentally. This is also probably why his doctor wants to leave the g-tube in for a prolonged duration - if the mandible repair occurs at, say 2 years, best to have the g-tube in there to feed him while he recovers from the surgery.

Most likely, if we do indeed procede with the macrostomia repair in March, the ear tags will probably be excised at the same time.

No word on the dermoid as that is up to Othamology which we won't see until 12/15/09.

They do not know why his breathing has gotten worse in the last few weeks. They suspect it may be related to the reflux (the acid may cause more mucus build up resulting in the raspy breathing). ENT (on 12/15/09) will probably be able to give more insight/visibility on this.

-bob

Minor Update

As of 10/20/09:

His oral feedings continue to be difficult and it is not hopeful that it will improve. We are almost certain that he will have a G-Tube inserted by Dec (that's not just our opinion but the doctor's). However, the doctors are satisfied with his current rate of weight gain. He seems to be a little less fussy/pissed off these days. But only a little. His breathing did get noisier/worse in the last couple of weeks but seems to have stabilized/improved a bit in the last week or so - and this is pretty consistent with what Children's told us would happen. So barring anything unforseen happening, we're still tracking for surgeries around April/May.

The only really scary thing at the very present is the flu. We've all been vaccinated against the seasonal but we're all still waiting for the swine flu. The doctors all said that should he contract it, it's almost certain it will require him to be hospitalized. So we try to stay home as much as possible until we can all get the vaccine.

-bob