The urology surgery that Luke was supposed to have today has been rescheduled for April 10th. Luke has to take antibiotics right now (because the stints are in his nose) and they have given him terrible bm's and diaper rash. Neither would be good for a urology surgery.
Otherwise, all 3 boys are doing well. Sam had tonsilitis last weekend, but he is doing better now. Luckily no one else got sick. But Sam had to miss the Cub Scout Pinewood Derby car race. The Scouts let Gus race for him, though. Sam came in 4th and Gus came in 5th in their den. We also had to miss a surprise 50th Birthday party for my brother Don. The boys were really sad about that. They love Uncle Don; he is a great guy.
Thursday, February 26, 2009
Friday, February 20, 2009
An unexpected visit to the OR
Don't worry, everything is fine. But Luke and I got to spend a long day at Children's yesterday. His nasal stints had come forward and were pressing horribly on the front of his nose. Since he is so little and the stints are sutured in they had to give him anesthesia to shorten the stints and fix the problem. Luke does seem to feel better today, so I am really glad we got that taken care of.
Luke is on antibiotics right now since he has "a foreign body" in his nose and it is giving him awful poo. So, we are going to have to reschedule his surgery with urology next week. I hope they can fit him in sometime in April. Our schedule for March just got a lot less crowded since the stints mean we have to postpone Luke's VitalStim therapy until they come out. We are adding something new though. Luke is going to have Audio Verbal Therapy at the HEAR Center (at Children's) every other week. We really need to work on Luke's receptive language, and it will be good to know what the AVT therapist thinks about how he is hearing.
Luke is on antibiotics right now since he has "a foreign body" in his nose and it is giving him awful poo. So, we are going to have to reschedule his surgery with urology next week. I hope they can fit him in sometime in April. Our schedule for March just got a lot less crowded since the stints mean we have to postpone Luke's VitalStim therapy until they come out. We are adding something new though. Luke is going to have Audio Verbal Therapy at the HEAR Center (at Children's) every other week. We really need to work on Luke's receptive language, and it will be good to know what the AVT therapist thinks about how he is hearing.
Friday, February 13, 2009
We're home
Luke is eating and snoozing in the other room, so I thought I would give you guys an update. Luke's choanal atresia repair went really well. His nose is finally open - really open. The surgeons were pleased and thought it might actually take this time. Dr. Hill (who is quite an experienced ENT) said it is the most difficult CA repair he has ever done, but that he finally has a good feeling about it this time. Luke's poor little nose is swollen and still draining, but he seems to have started feeling better. The whole time at the hospital he just laid on his back in the crib. He smiled a few times, but was not himself. Then just before we left I got him dressed and that was his cue to get back to normal. He turned over and crawled in the crib and pulled up on the side. Then in his stroller he was bopping around and flirting like usual.
The not so good news from yesterday is that Dr. Hill was not able to remove the granuloma from inside Luke's airway. We didn't even know that was an option. So now the only way to get it out is to do an open procedure (basically opening his trachea and then redoing the stoma like it is a fresh trach) or removing it when doing a Laryngotracheal Reconstruction (LTR). One of these should happen on May 7th. With the first option Luke would have to stay in the hospital for a week as his new stoma starts to heal. Then after he went home we would try capping and seeing if he is ready for his trach to come out. If the capping doesn't work or Dr. Hill decides on the 7th that reconstruction is necessary, a single stage LTR will be performed. This is a pretty major surgery in which a cartilage graft is taken from Luke's ribs and inserted in his trachea to enlarge it and stabilize the area that the trach stoma is in. He would be mainly sedated for a week and be in the hospital for a few weeks (I think). The main benefits of the first procedure are that it is much less invasive and removing the trach should be less traumatic (for all of us). The main benefit of the single stage LTR is that the trach would come out with the surgery, a much faster process. But basically it comes down to whatever Dr. Hill decides is the best choice for Luke. Whichever way it goes, Luke has a good chance of being trach-free sometime this year.
We were surprised yesterday to find that Luke had a sedated hearing test scheduled. And then we were even more suprised by the results. Despite the fact that Luke has seemed to respond more and more to sounds, both with and without his hearing aid. The hearing test results weren't very good. The test showed an 80 db loss in right ear and a 90+ db loss in his left ear (both severe losses) unaided. And the biggest surprise - it showed a 60 db loss even with the bone conduction aid. As far as we were aware, Luke had normal hearing with his bone conduction aid. We are trying not to get too worried and go more with what we see Luke doing than the results of this one test. No matter what any of Luke's tests show, he is going to develop some form of communication. We just need to figure out what is going to work best for him. The test is going to be repeated when Luke's stints are removed in 6 weeks, so lets just hope these current results are an anomaly.
Here is Luke's upcoming surgery schedule:
February 26: Third and final orchiopexy surgery with urology
March 26: Stint removal and hearing test
May 7: Granuloma removal, checking Luke's nose to see if it is still open, and possible LTR
And in the midst of all that are the boys' birthdays. Luke will be 2 next Tuesday the 17th. And Sam & Gus turn 7 on April 30th. I promise to keep you all updated about what is happening. I will upload some photos too, as soon as I can get Rob to install the software that came with our new camera.
Luke is still keeping busy with VitalStim and his Bell Center and ARC therapies. And Sam & Gus are really enjoying school and Cub Scouts. (I have to post a photo of them in their uniforms - they look so cute!). So it will be a busy Spring just like last year.
The not so good news from yesterday is that Dr. Hill was not able to remove the granuloma from inside Luke's airway. We didn't even know that was an option. So now the only way to get it out is to do an open procedure (basically opening his trachea and then redoing the stoma like it is a fresh trach) or removing it when doing a Laryngotracheal Reconstruction (LTR). One of these should happen on May 7th. With the first option Luke would have to stay in the hospital for a week as his new stoma starts to heal. Then after he went home we would try capping and seeing if he is ready for his trach to come out. If the capping doesn't work or Dr. Hill decides on the 7th that reconstruction is necessary, a single stage LTR will be performed. This is a pretty major surgery in which a cartilage graft is taken from Luke's ribs and inserted in his trachea to enlarge it and stabilize the area that the trach stoma is in. He would be mainly sedated for a week and be in the hospital for a few weeks (I think). The main benefits of the first procedure are that it is much less invasive and removing the trach should be less traumatic (for all of us). The main benefit of the single stage LTR is that the trach would come out with the surgery, a much faster process. But basically it comes down to whatever Dr. Hill decides is the best choice for Luke. Whichever way it goes, Luke has a good chance of being trach-free sometime this year.
We were surprised yesterday to find that Luke had a sedated hearing test scheduled. And then we were even more suprised by the results. Despite the fact that Luke has seemed to respond more and more to sounds, both with and without his hearing aid. The hearing test results weren't very good. The test showed an 80 db loss in right ear and a 90+ db loss in his left ear (both severe losses) unaided. And the biggest surprise - it showed a 60 db loss even with the bone conduction aid. As far as we were aware, Luke had normal hearing with his bone conduction aid. We are trying not to get too worried and go more with what we see Luke doing than the results of this one test. No matter what any of Luke's tests show, he is going to develop some form of communication. We just need to figure out what is going to work best for him. The test is going to be repeated when Luke's stints are removed in 6 weeks, so lets just hope these current results are an anomaly.
Here is Luke's upcoming surgery schedule:
February 26: Third and final orchiopexy surgery with urology
March 26: Stint removal and hearing test
May 7: Granuloma removal, checking Luke's nose to see if it is still open, and possible LTR
And in the midst of all that are the boys' birthdays. Luke will be 2 next Tuesday the 17th. And Sam & Gus turn 7 on April 30th. I promise to keep you all updated about what is happening. I will upload some photos too, as soon as I can get Rob to install the software that came with our new camera.
Luke is still keeping busy with VitalStim and his Bell Center and ARC therapies. And Sam & Gus are really enjoying school and Cub Scouts. (I have to post a photo of them in their uniforms - they look so cute!). So it will be a busy Spring just like last year.
Wednesday, February 11, 2009
Luke's surgery tomorrow
In this much overdue post, I just wanted to let you know that Luke is having surgery tomorrow. It is with ENT - a choanal revision (basically a redo of his initial choanal repair). This time Dr. Hill is going to take away the back part of the septum in the hope that Luke's nose will finally stay open. Luke is going to get stints for 6 weeks again. Both times he has had them for the 6 weeks which included his birthday (Luke turns 2 on the 17th). Dr. Hill is also going to laser away the granuloma inside Luke's trachea near the trach stoma. This should allow Luke to wear his PMV and babble again. We are expecting Luke to stay in over night, but hopefully not longer. It should be fine and pretty routine, but my nerves are acting up anyway. You would think this would get easier, but I think it gets harder in some ways.
We will try to update tomorrow or Saturday at the latest about how everything went. Until then, your positive thoughts and support would help a lot! Thanks!
We will try to update tomorrow or Saturday at the latest about how everything went. Until then, your positive thoughts and support would help a lot! Thanks!
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