These two were amazing travelers! Tomorrow, 7 weeks post-surgery, Jack will get the stent out of his airway! Prayers appreciated that all goes smoothly. He will then have a follow up on Tuesday, October 4th to see how his airway is healing/looking.
September 26, 2016
The doctor said Jack's airway looked as he would expect after having had the stent in for 7 weeks. He said the real test will be how it looks next week. But the airway is open right now so we will see if it stays that way! They are going to keep him for the night just for observation. Praising God for things looking "as they should" at this part of the process!
September 27, 2016
Jack had a great night and was discharged this morning!
October 4, 2016
Not the best news, but not the worst. Jack had granulation blocking part of his airway but it was a good size airway once they removed it. His next appointment will be in a week or two for another look at how the airway is healing.
October 11, 2016
Just wanted to share that Jack's next appointment is this Thursday. He will have another scope done to see how his airway is looking. I also wanted to share this video with you. Even though last week's news was not the best, since getting the stent removed, Jack has been able to tolerate a speaking valve on the end of his trach for short periods of time. This is encouraging and exciting because he has never been able to tolerate it before. It forces him to exhale through his nose and mouth (for the most part) instead of the trach- so we know his airway is more open than it has been before. In the video he is roaring like a lion and seeing what it feels like to breathe through his nose and mouth. :) Praising God for this encouragement and hope!
October 13, 2016
Jack had his best post op appointment yet (last year or this year). The doctor said his airway looks surprisingly close to being ready to cap the trach, meaning he would still have the trach but he would have a "cap" on the end of the trach so he would only be able to breathe through his nose and mouth. So they dilated his airway today and the next appointment is 11/1 when they will take another look at the airway and see if he is ready for the capping trial. Praising God for the great news we got today!
Today's news was not what we were hoping for. We were hopeful Jack's airway was open enough to do a capping trial. Instead, things have gone backwards and his airway has been closing back up. His airway was dilated again today and he will have another appointment next week. In the next few weeks we will learn if dilations will be all that he needs, if he is ready for a capping trial and/or if he needs a stent placed again for a prolonged period of time. This journey is definitely a roller coaster. Thank you for your words of encouragement and prayers through it all!
November 8, 2016
Jack always keeps us on our toes. He was scheduled for his next scope tomorrow, but ended up getting sick last night. After talking to the hospital today to update them, they asked us to bring him to the ER. After being evaluated, Jack will be admitted for at least one night for observation. From the tests he has had done, he seems to be fighting a respiratory bug and will be treated for pneumonia.
November 9, 2016
Jack had a good night! The plan is for him to stay in the hospital until he is off supplemental oxygen and is tolerating his normal feeding schedule. Once he is discharged, we will see what the plan is for the next scope of his airway.
November 10, 2016
Jack got discharged! Please continue to pray for a speedy recovery for Jack. If he is healthy enough on Monday, the scope will hopefully be that day. It is a balancing act of not losing the last four months of progress and Jack being healthy enough for a procedure. Prayers for wisdom for the medical staff and Brent and I are appreciated!
November 15, 2016
Jack always keeps us on our toes. He was scheduled for his next scope tomorrow, but ended up getting sick last night. After talking to the hospital today to update them, they asked us to bring him to the ER. After being evaluated, Jack will be admitted for at least one night for observation. From the tests he has had done, he seems to be fighting a respiratory bug and will be treated for pneumonia.
November 9, 2016
Jack had a good night! The plan is for him to stay in the hospital until he is off supplemental oxygen and is tolerating his normal feeding schedule. Once he is discharged, we will see what the plan is for the next scope of his airway.
November 10, 2016
Jack got discharged! Please continue to pray for a speedy recovery for Jack. If he is healthy enough on Monday, the scope will hopefully be that day. It is a balancing act of not losing the last four months of progress and Jack being healthy enough for a procedure. Prayers for wisdom for the medical staff and Brent and I are appreciated!
November 15, 2016
With Jack having been sick, we weren't sure if he would end up having a scope yesterday or not. Since he discharged from the hospital at the end of last week, he has continued to have his fastest recovery from this type of illness. He did end up having a scope yesterday and his airway was still a little open and more so than anyone thought it would be! He got his airway dilated again and his next appointment will be on Monday when they will most likely either cap the trach if all is looking amazing or put a stent back in for about two months if the airway is still not staying open enough.
November 21, 2016
Jack's airway looked decent enough today that the doctor was not quite ready to give in to replacement of the stent (great news!)... yet. It also did not look open enough for his trach to be capped. So,... they dilated again today and took out some granulation and will take another look a week from tomorrow. Thanks for the continued prayers for Jack and our family.
November 29, 2016
Jack's airway looked good. They did not dilate today and just tried to see what the biggest size breathing tube was that they could fit in to get an idea of the size of his airway at this point. With the history of his airway not always staying open after dilations, etc., last year and this, they want to take another look next week to make sure things seem like they will stay open before we go home for a bigger chunk of time. Capping most likely won't happen yet, but still could at next week's appointment.
December 9, 2016
76 days. 8 states. 8 procedures for Jack under anesthesia. 1 unexpected hospital trip for an EKG. 1 ER visit and inpatient stay for pneumonia. And now, home sweet home!
Jack's appointment this week was pretty good. Jack's airway is not ready for his trach to be capped yet, but we will be going back in a couple of months to see how things have continued to heal and go from there. It is great news that for now we have been able to avoid another stent placement. Also, he was able to tolerate a speaking valve, from a pressure stand point, with no holes drilled in it. (His current one had one hole drilled in it to allow him to breathe out a little bit through his trach) With no holes drilled in it, he can inhale through his trach, but has to breathe out through his nose and/or mouth. SO much to be thankful for and praising God for it!
Thank you to all our friends and family who were in some way, big or small, part of this adventure in our journey. So thankful for the many great memories amongst all the medical things going on over the last few months.
No comments:
Post a Comment