Sutton's tests in the OR yesterday showed great healing. His vocal cords and airway are recovering well since the mass has been removed and his esophagus is well healed and functioning properly. They dilated the upper portion of his esophageal repair, but said that the amount they stretched was pretty negligible.
The good news is his esophagus didn't really have any narrow areas. This is a bit frustrating for me, because I had hoped that was the key and we would see great strides in his ability to eat and drink by mouth after this. So, more slow and steady progress. Our ENT referred to him as a "moving target." Since he is 15 months old we are not only trying to train the new portion of his esophagus to work well with his existing esophagus, but we are battling developmental milestones and independence issues as well. The really great part of him not having really constricted scar tissue that needed to be dilated? It could mean that he doesn't spend his entire life fighting a constantly tightening esophagus and may not require dilation throughout his life. It stinks now for Kedric and me, but this is absolutely the best case scenario for him to have minimal lifetime repercussions from this. For those of you that have children you can understand --- I would much rather this be hard on us now than hard for him forever.
Also, his GJ button was traded out yesterday for a G button which is allowing us to have lower maintenance for his button cares and, since it sits much closer to his skin, hopefully less interest as a toy for Sutton :) He has been tolerating all feeds into his stomach for a few weeks now which is big relief and now we can move to only feeding him during the day (instead of around the clock). This is a huge blessing because his secretions are markedly decreased when he doesn't get feeds through the night. This means less suctioning and, for this tired mama and daddy, getting this big guy back into his own room before the new baby joins us!
So, we will head home today and resume our monthly follow up plan with ENT. We will have one more visit before Sutton and Cohen's new brother arrives. Please pray for our patience and Sutton's persistence as we continue to progress through his ability to eat and drink by mouth.
Tuesday, September 30, 2014
Monday, September 29, 2014
Another OR visit
This morning was early and it gave me some time to reflect before we left for the hospital. In two weeks it will have been 10 years since I heard my mom say those terrible words, "Melissa, your brother has been in a terrible accident." They still haunt me. But today --- today is a celebration of Michael's birth. He would be 39. So I was thinking, this must be a good sign that everything was scheduled for today. Today is a day of good news and joy, and that is helping to keep my nerves at bay as we sit in the same waiting room we sat in on June 16.
I am hopeful for good news from Sutton's tests and an uneventful dilation of his esophagus. Even more so, I am excited at the possibility of what the end of the week will look like at meal time and even what the months to come may look like. The last time we sat in this waiting room it changed the landscape of Sutton's life, and ours, permanently. I am hopeful that today is a tipping point and we can finally see some glimpses at what normalcy looks like again.
Prayers for his safety and the success of his tests and (possible) procedure are greatly appreciated.
I am hopeful for good news from Sutton's tests and an uneventful dilation of his esophagus. Even more so, I am excited at the possibility of what the end of the week will look like at meal time and even what the months to come may look like. The last time we sat in this waiting room it changed the landscape of Sutton's life, and ours, permanently. I am hopeful that today is a tipping point and we can finally see some glimpses at what normalcy looks like again.
Prayers for his safety and the success of his tests and (possible) procedure are greatly appreciated.
Thursday, September 18, 2014
Dr. Cohen
Cohen tries to be so helpful with all of Sutton's extra cares, including giving him his nightly meds. It's just so darn sweet ❤️
Friday, September 12, 2014
New hurdles
Since our last visit to St. Louis two weeks ago, Sutton has made little progress in his ability to eat and drink by mouth. About a week ago, very frustrated and ready to throw in the towel, I contacted our physician and the speech pathologist. We were battling developmental hurdles like Sutton wanting to do it all himself and not wanting to allow me to help as well as a huge spike in secretions and his need to be suctioned. They gave me some tips and encouragement, but by our visit on Wednesday we had still not had any progress.
The problem isn't as much the lack of progress, as there are bound to be plateaus on this journey, but the backslide he (and I) have had. He is requiring very frequent night time suctioning again and now requires day time suctioning - something he hasn't needed in a few weeks. Maybe it's teething, maybe it's a virus, maybe it's his esophagus needing to be dilated. We don't really know at this point. We had also previously weaned him from all of his medications except the one for his reflux, but now we have added the medication to thicken his secretions back to the repertoire in the hopes that it will help him clear the secretions a little better.
At our ENT/surgery/speech visit this week they scoped Sutton again. They also gave him some puree while they were in so they could visualize his swallowing ability. He wasn't a big fan, though he never is. And Cohen, sweet kid, was very attentive to his brother's needs after they were done. What we saw was that he seemed to be very delayed in his realization there was food at the back of his throat that needed to be swallowed down his esophagus and, therefore, delayed in his response of actually swallowing. This resulted in lots of coughing and extra secretions (pretty standard at our meal times). The good news is that everything seems to be healed up nicely and it appeared that his right vocal cord had some function.
The concern with this delay is that he actually can't feel the food in the back of his throat because the nerves have not yet reestablished their pathways from all of the surgeries. The discouragement here lies in the amount of time it can take for nerves to repair, if they are able to repair themselves. With a new baby in November and Sutton's obvious vigor for learning to eat by mouth again, we were all hopeful that a more normal way of life would be in full swing by the arrival of #3. Now, we're not so sure. Realistically, it could be well into the spring before he gets some sensation back and, for those of you that have had surgery before you can understand, it's also possible it may not return. We are still hopeful this won't be the case, though, as the nerve damage that affected his face (left half responsive, right half unresponsive when upset and his droopy right eye) has improved dramatically.
So, tube feeds for the indefinite future and letting Sutton play and attempt to eat and drink even if he doesn't actually get any nutrition from that route is what we will do for now. We are scheduled for an outpatient OR visit at the end of September for ENT and surgery to look at his esophagus, airway and vocal cords. If they get in there and decide that he needs his esophagus dilated, they will do it while he is under so that he doesn't have more anesthesia than necessary. If they dilate him, he will be admitted overnight for observation.
Please keep him in your prayers for safety and continued progress and us for sanity :)
The problem isn't as much the lack of progress, as there are bound to be plateaus on this journey, but the backslide he (and I) have had. He is requiring very frequent night time suctioning again and now requires day time suctioning - something he hasn't needed in a few weeks. Maybe it's teething, maybe it's a virus, maybe it's his esophagus needing to be dilated. We don't really know at this point. We had also previously weaned him from all of his medications except the one for his reflux, but now we have added the medication to thicken his secretions back to the repertoire in the hopes that it will help him clear the secretions a little better.
At our ENT/surgery/speech visit this week they scoped Sutton again. They also gave him some puree while they were in so they could visualize his swallowing ability. He wasn't a big fan, though he never is. And Cohen, sweet kid, was very attentive to his brother's needs after they were done. What we saw was that he seemed to be very delayed in his realization there was food at the back of his throat that needed to be swallowed down his esophagus and, therefore, delayed in his response of actually swallowing. This resulted in lots of coughing and extra secretions (pretty standard at our meal times). The good news is that everything seems to be healed up nicely and it appeared that his right vocal cord had some function.
The concern with this delay is that he actually can't feel the food in the back of his throat because the nerves have not yet reestablished their pathways from all of the surgeries. The discouragement here lies in the amount of time it can take for nerves to repair, if they are able to repair themselves. With a new baby in November and Sutton's obvious vigor for learning to eat by mouth again, we were all hopeful that a more normal way of life would be in full swing by the arrival of #3. Now, we're not so sure. Realistically, it could be well into the spring before he gets some sensation back and, for those of you that have had surgery before you can understand, it's also possible it may not return. We are still hopeful this won't be the case, though, as the nerve damage that affected his face (left half responsive, right half unresponsive when upset and his droopy right eye) has improved dramatically.
So, tube feeds for the indefinite future and letting Sutton play and attempt to eat and drink even if he doesn't actually get any nutrition from that route is what we will do for now. We are scheduled for an outpatient OR visit at the end of September for ENT and surgery to look at his esophagus, airway and vocal cords. If they get in there and decide that he needs his esophagus dilated, they will do it while he is under so that he doesn't have more anesthesia than necessary. If they dilate him, he will be admitted overnight for observation.
Please keep him in your prayers for safety and continued progress and us for sanity :)
Monday, September 8, 2014
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