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
Wednesday, January 27, 2010
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
-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
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
-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
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
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
Thanks for all your prayers.
-dina
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