Friday, January 29, 2010

Jonathan The Mime

Poor Jonathan has a huge canker sore on his bottom lip. This has made eating, drinking, and even talking uncomfortable for him. The upshot is that he isn't eating/drinking as much as he normally does and when he plays, he plays *exactly* the way he normally plays except now it's completely silent. Even interactive games he plays with me where he usually says something (like quotes from Charlie Brown, Veggie Tales, or whatever) - he plays exactly the same except when he usually says something, he's just quiet - but you can see him going through the words/lines in his mind.

We've been putting Ambesol on it (when he lets us - I guess he hates the taste and it does sting on the site of the sore when you first put it on) and it has helped tremendously. When we can get it on, within minutes he's back to normal. But in a few hours, it wears off and Jonathan the Mime returns.

- bob

Wednesday, January 27, 2010

First Full Day Without The NG Tube/Sitting By Himself

Tuesday January 26, 2010

Ethan had his first full day without a tube in his nose and hanging off of his face. I think he really enjoyed himself. Mommy sure enjoyed spending time with her baby without having to worry about a tube for the first time since the day he was born. He seemed much happier today and smiled a lot. He also had a really good oral feeding day. He took more than 50% of his feed orally several times today.

Ethan also sat up by himself for the first time today. Well, he has been able to sit by himself for a while now, but he was always leaning way forward and not able to sit straight up. Today, he sat straight up on the couch for what seemed like at least a half an hour. There were blankets and cushins around him, but he still sat there watching Jonathan while playing with his toys. At one point, he started to learn forward and he was able to pick himself straight back up.

I don't know if it was getting the NG Tube out or what, but Ethan just seemed so much older today like he grew a lot overnight. After 5 months of having something in your nose and down your throat, it must feel so good not having something there.

I am so proud of Ethan. I am proud of Jonathan too. I can't stop staring at them! Mommy is so proud of her boys and loves kissing both of Ethan's cheeks alone and not kissing tape and a tube over the skin.

-Dina

Monday, January 25, 2010

No More NG Tube!

We went to the doctor today and they said that we can start using the G Tube, so no more NG Tube. The funny thing about the whole situtation was that Ethan actually pulled his tube out right before we went down to Children's Hospital for his appointment. We didn't want to put it back in just in case we were able to use the G Tube (we were told we couldn't use it for a week which would be Wednesday), but low and behold the nurse said that the tube and skin looked like it was healing very well so she said we could leave the tube out. Ethan knew he was done and decided to take matters into his own hands. That is just like him. Smartie. Bob and I are thrilled about getting rid of the NG Tube. I keep hearing the same song in my head......"So long. Farewell..."

-dina

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

Sunday, January 24, 2010

5 Days Post Surgery

Ethan continues to do well after his surgery. He is off the Ibuprofin and is only taking Tylenol now. He is pretty much back to his normal self, though his incision site where the feeding tube was inserted still seems to be quite sore still. When I am cleaning it, he really reacts as if he is in pain. I really feel bad that I have to clean it since it hurts him, but it must be done to keep from getting infected. We have our regular Craniofacial visit tomorrow and a post op appointment to learn how to use the new G Tube.

-dina

Friday, January 22, 2010

Ethan's Home After First Surgery

Hi Everyone. I just wanted to let you all know that Ethan is home now. The docs wanted to make sure that Ethan was able to take his meds orally and take a full feeding (either orally or through his NG tuge) before he was discharged from the hospital and able to keep it down. After the surgery on Wednesday, he was understandably irritable with every movement and slept a lot. He was on IV fluids and not allowed to eat all day. By Thursday morning, he woke up very alert and looking around. By lunchtime, he was off the morphine, eating, talking, and smiling. They started him off with a small amount of milk and slowly increased it throughout the day. After each feed, he did wonderfully and kept it down. His oral feeding is little low now, but hopefully that will increase as the days go on. The nurses and docs were very pleased with his progress and by 9pm, he took his first full feed and kept it down. We were discharged at around 10pm last night, though we had the option of staying. I didn't see a real reason to stay other than it was late, so we came home. Our discharge papers had been written up by early afternoon so I had already reviewed them with a nurse and been taugh G Tube care already, so discharge was incredibly quick.


Today, he is doing well. He's a little irritable today, but doing well. He's on pain meds every 4-6 hours for a few days. We have a follow up appt on Monday where we will learn how to use the G Tube. At this point, we cannot use the G Tube until it heals next week, so for now he still has the NG Tube in his nose. It will be wonderful to get that out.

All the nurses and docs were absolutely wonderful and got us through Ethan's first surgery. We were visited frequently by docs and nurses to check on him. The scariest thing about this stay was that Ethan's IV came out twice and each time there was a lot of blood. I can't believe how much an IV bleeds when it comes out. When the IV team came to reinsert it, they tried his other hand and had no success so they tried one foot and had no success so they finally got it in the other foot. Poor guy has holes in both hands and feet :(

Thanks to all of you for your prayers and well wishes. This will be posted on the blog as well as some pics. I have to say that on Wednesday morning during the surgery all I wanted to do was cry. As Bob and I were waiting for the doc, I checked my email and many of you had written us well wishes and those really helped! Thank you so much! Jonathan even came to visit his little brother and loved playing in the play room. He also had a great time with daddy and grandma. Thank you also to my Uncle Scott for bringing me lunch and staying with me yesterday. It was great spending time with you!

-Dina

Wednesday, January 20, 2010

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

Tuesday, January 19, 2010

First Surgery Tomorrow

Ethan's first surgery is scheduled for 8:30am tomorrow morning. Check in time is at 7:15am. Surgery is supposed to take 45 minutes. He will get his G tube inserted into his stomach which will hopefully help improve his oral feeding since he will be able to get his NG tube out next week. The hope is that getting the tube out of his throat will help improve his ability to swallow. Who wants to swallow when there is a tube down your throat? Must not feel good at all.

Thanks for all your prayers.

-dina

Sunday, January 17, 2010

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

Monday, January 11, 2010

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

Thursday, January 7, 2010

A New First

Ethan hit a new milestone today: for the first time he took a full feeding orally out of his bottle. He has never even come close before, though he has taken up to 75% before. He took the full 105 mL of breastmilk in just over a half hour with several breaks. We are so proud of him! Though we do not expect this to be the new normal, it is encouraging that he can actually take a full feeding.

-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

Sunday, January 3, 2010

Christmas 2009

We spent Christmas in Vancouver this year. It has been three years since we've spent Christmas with Bob's parents. Now that they are in Vancouver, we can travel by car to get there. The car was packed with Ethan's necessary equipment. If Bob's parents still lived in Edmonton, we could not get on a plane with all the necessary stuff we would need.


Christmas was so much fun this year with Jonathan. He was able to open presents last year, but this year he really understood what presents were all about. He got a lot of Disney cars and Thomas the Trains. He was SO excited to open his presents. Bob put his presents under the tree a couple days early and he kept touching them and so did Foster. We let Jonathan open one present on Christmas Eve. When he woke up Christmas morning, the first thing he asked to do was open presents.






















At the Metrotown Mall, Jonathan got to ride a train. He absolutely loved it. The first time we went, he had the biggest smile on his face when he was done. It was SO cute and I got the smile on video! The day before we came home, we went back to the mall so he could ride the train again and he rode it four times, one time in each of the four cars. The conductor chuckled when he kept getting back in line to ride the train. While the train was moving, he kept making Thomas faces. Unfortunately, we couldn't get a picture or video of it.

This Christmas was also Ethan's first Christmas. He did very well while we were in Vancouver and he got to meet many of Bob's extended family members. Ethan sure loved watching his big brother run around and play with his toys. One time Ethan was playing with his flower toy and it fell off the couch. Jonathan ran over and picked it up for him. What a good big brother!

Friday, January 1, 2010

Merry New Year!

"Merry New Year! "
"Happy. Happy New Year. In this country we say "Happy New Year"! "
"Ah ha ha ha! Thank you for correcting my English which stinks! "
(Obligatory New Year's quote from a great movie...)

So what can I say as we roll into 2010? It's been a long 2009 and a much longer last 4 months of 2009. I suppose the cusp of a new year has always traditionally been a time for reflection and introspection. And as our family starts into and stares into the great unknown that we call '2010', I can't help but think about how the events in 2009 in the larger world sort of loosely parallel what's happened in our little corner of the universe.

We came into 2009 staring into the abyss of financial and economic Armageddon and by March, it almost seemed that it would be a certainty and that Great Depression II was almost upon us. But without much fanfare or noise, things turned around, and through some fits and starts, we end 2009 with Armageddon averted and head into 2010 with cautious optimism. The economy and the problems associated with it have a long way to go, but, for now, we have cautious optimism.

So too, for our little clan. The arrival of an addition to a family is, while a joyous occasion, also fraught with it's share of stress. But add to the mix the problems of, well, "problems", and it can seem overwhelming at times and despair can creep in and I've had my moments when I feel like I'm staring into the Abyss. But we have much to be thankful for, and while we have a long way to yet venture on our journey, we still have cautious optimism. While the problems before us are large, they are not insurmountable and while Ethan has issues, we have to remember and be so grateful that *none* of them are life threatening. Like the larger world, we too have a long way to go, but we have cautious optimism.

So what can I say as we roll into 2010? Maybe a cautious but optimistic "Happy New Year everyone. "

-b