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  #1  
Old 04-27-2012, 12:26 PM
IzzyB IzzyB is offline
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Default Good news and kind of expected news....

Sorry I have not been on here lately. I do check in and read posts or search. But with reduced nursing hours, work getting more hectic, my daughter crawling everywhere, my husband in school, and my daughters swim lessons I seem to have less and less time. I just wanted to update you guys on my LOs surgery yesterday.

So he went in for ear tubes (fluid in his ear that has never allowed them to do a hearing test), testes brought down, circumcision, airway scope, nose scope, possible balloon, and hearing test.

So to give you a little history if you don't remember. He got a trach when they couldn't establish an airway for a nissan and g-tube surgery. They didn't know why, but said he would need the trach for a month. Well a month turned into two, then three, etc. he eventually got a scope 4 months after he got the trach and it showed that he had stenosis and it was probably from when he was intubated as a baby. they said he would not grow out of it and would need major airway surgery to get the trach out. They wanted him older to do this. Well he eventually went on a vent for CO2 retention and started to quickly improve in all areas (no more O2 needed, we started to fix the reflux, etc). He also started making noise with the vent, which none of the doctors understood how.

So fast forward to yesterday. Our ENT thought with the noises his airway improved and that they might try balloon dialation to see if that allows them to skip surgery. I read on here it didn't work for most, so I didn't have high hopes. Well the doctor came out of the OR and said his airway is completely open and therefore they never did the dilation. He said that getting rid of the secretions, reflux, and throwing up must have somehow helped it and well there is no stenosis anymore. ALL of us were and still are in shock. So now the plan is wean off the vent, then do capping trials to eventually get rid of the trach. He does have a narrow part, but we were told it is soft tissue and should not cause any issues for him to be decanned.

So now for the other news. The eartubes were placed and they said there was some structural issues they saw. They later came out after the hearing test and told us he can only hear high pitched tones and will need hearing aids. The doctor doesn't even want to discuss surgery until he is older because as he said, who knows with Johnny, he may just outgrow this too. So while bad, honestly I was expecting it. I knew he could only ever hear certain noises and so it makes sense. But with the ear tubes he can hear better today than he did yesterday and with hearing aids he will be able to hear better with them than he can today. he can hear language, which is good. So overall I think it was a successful day. Now onto recovery because he is not happy about the pain from the testes
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Old 04-27-2012, 09:43 PM
SammyJo SammyJo is offline
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Great news about the airway! At least that part is resolved! Hope his recovery goes well! Its sounds like you have a great outlook on the situation. Thanks for the update!
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Alex, mom to Samantha born 38 weeks on March 7th, 2011 with Congenital Nasal Pyriform Aperture Stenosis, trached 3.30.11. Grade I Congenital SGS, diagnosed 11/30/11. Also mom to big brother Luke (3).
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  #3  
Old 04-27-2012, 11:26 PM
principe principe is offline
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Wonderful news. So exciting that the stenosis is gone. It must have been shockingly exciting to hear his airway is open when you were already thinking "reconstruction surgery". Just wonderful...How long has he been with the trach? When are they thinking a about decan? Congrats...
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Ana, mom to Aldo. Full term on 10/10/2010. Congenital Anterior Glottic Web & Subglottic Stenosis. 10/29/2010 Single stage LTP; web removed. Reconstruction surgery was a success but Aldo developed edema below the vocal chords and continued struggling to breath. Tracheostomy on 04/01/2011. Eats by mouth. High blood pressure resolved (it was probably due to hard breathing).
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Old 04-27-2012, 11:46 PM
IzzyB IzzyB is offline
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He has had it since March '11 and they have not given an estimate for decann. We are thinking 4 to 5 months to get rid of the vent and 3 to 4 months after that for decann. BUt you never know, it could be longer or shorter. He is doing really well with sprinting off the vent and there are days he is off for over 6 hours. We could do more, but we put him back on because we are supposed to. Our official orders are 4 1/2 hours a day and we are allowed to up that 30 minutes every two weeks. But we see the pulm next week and we are going to ask about increasing it. We did not push it because they said they would keep him on the vent until after airway surgery. But now that there is no surgery, we are going to push for his time increases to happen more often.
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Old 04-28-2012, 08:06 AM
Caleb'sMom Caleb'sMom is offline
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that's great news. just thought I'd share r.e. hearing loss:

my son has some "moderate conductive hearing loss of low tones in his left ear". he is also on a vent (we just started weaning off it).

interestingly..the audiologist said that the decibles that he starts have trouble hearing at are the same decibles that the vent noise starts to pick up at. basically they were saying its possible that some of the hearing loss could be from the noise of the vent blowing through his trach. The trach is so close to your sinuses and ears that it could block some sounds.

When he was in the NICU they wouldn't do a regular hearing test because of this reason.

However...his ENT is under the opinion that the vent noise makes no difference. When I asked him about it he said that different doctors have different opinions about the vent being noisy enough to cause hearing problems.

Anyway...just thought I'd share. In our case I believe our son probably has some mild hearing loss of low tones in his left ear but that it's exacerbated by the vent noise. Now that he has time off the vent we will try another behavioral hearing test like that and see if it makes a difference.

Best of luck!
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Mom to Caleb- born 9/7/2010 at 40 weeks, VACTERL association, thoracic insufficiency syndrome/restrictive lung disease related to scoliosis and missing/fused ribs, trach and G tube on 12/21/2010, home for the first time on 1/12/2011 , VEPTR implant 1/2012 with expansions or replacement of rods every 3-4 months, Vent free March 2013, Decannulated July 2013! also mom to Oliver- born 5/27/2013
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Old 05-04-2012, 09:42 AM
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EDodson EDodson is offline
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"Now onto recovery because he is not happy about the pain from the testes "

I have just scheduled Rylan's surgery to have his testes brought down. I am a little apprehensive about the procedure based on our conversation with the Urologist. I was curious about your experience. Were they in his belly? How invasive was the procedure, did it only take one surgery? I am just left with so many questions and am beginning to think this is not the right Doctor for us.

Rylan has one still in his belly and one that has dropped low enough for a fairly simple procedure. Our Dr. said he would not get the one in the belly because it would consist of 2 surgeries and drains for 6 months. He feels like it is more risky and because Rylan is a mito kid who is 100% vent dependent there is no need to retrieve the other.

Just curious of what to expect and if it is as complicated as he made it sound.

Thank you!
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Elizabeth - Mom to Brayden -9- Completelyhealthy. Rylan - Born 5/3/2011 with severe PPHN. Diagnosed with bilateral paralysis of the diaphragm with unknown cause. 100% vent dependent. Mitochondrial disease
http://www.caringbridge.org/visit/rylandodson
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Old 05-04-2012, 03:25 PM
IzzyB IzzyB is offline
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I don't think that my son's were up that far because the dr was able to pull them down during the exam. There are two incesions on his belly area and then two small stitches on his testes area. The surgery took 2 hours and the recovery is 7 to 10 days. No second surgery or any of that other stuff you talked about. I have heard of buttons and things like that, but I think my son's were more simple. We won't know if it takes for good until the next exam. He was in pain, but he also got circumcised and I am sure that was part of it too. He is better now and we haven't even had to use regular tylenol in over 24 hours. So all is good so far. He is sitting up now propped with bobby pillows, but no seats that have anything between the legs (like his high chair) until the stitches come out. The first couple days were rough, but he is better now.

I have heard some things about not getting them fixed like higher risks of cancer and things like that. So to me I felt like we had no option, but I am sure each child is different.
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Old 05-08-2012, 08:13 AM
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EDodson EDodson is offline
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We spoke about the risks for cancer but he said the risks were not great enough for it to be justified to him. Rylan is also going to be circumcised and I know that will add to the pain. I think I am going to get a second opinion. I should have walked out of that exam room knowing what to expect and how exactly the surgery would work. Instead I was dumbfounded by his lack of bedside manner. I can take blunt but I was not expecting it that day. He did not at all prepare us, tell us about recovery, or even how long we would be in the hospital. When we asked we got very short vague answers. Thank you for your help - I do believe I will be seeing a new Urologist.
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Elizabeth - Mom to Brayden -9- Completelyhealthy. Rylan - Born 5/3/2011 with severe PPHN. Diagnosed with bilateral paralysis of the diaphragm with unknown cause. 100% vent dependent. Mitochondrial disease
http://www.caringbridge.org/visit/rylandodson
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  #9  
Old 05-08-2012, 10:36 AM
IzzyB IzzyB is offline
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I would see a new doctor. Our urologist told us what was going on, he didn't want to do the circumcision because my son is chubby and he was concerned about it not healing right if we didn't care for it properly. But we told him we have 18 hours of nurses M-F and night nurses on weekends. We also had 3 grandparents around for the first 5 days after surgery. So the diaper was going to get changed often and we would use plenty of Vaseline. It is normally an outpatient procedure, but my son was getting so much that they said we may have to stay one night. Our cardiologist wanted us in there the night before to get fluids, but we told them no and so did the anesthesiologist. He knows our son and knows that IVs are an issue, so there was no way they were getting an IV in him overnight for fluids. When we got to the hospital and talked with the anesthesiologist he also agreed with us that if possible he should be sent home after surgery. We have an awesome night nurse who would give him way more attention that the nurses in the hospital would be able to give him. After surgery he said it went well and that he can go home. We have really gotten to know Johnny's anesthesiologist and he tries to work with us on stuff. So he is normally the one that runs the surgeries since we have different doctors doing the surgeries each time.

A second opinion never hurts and if anything you just might get a better explanation of what your son needs and why.
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