Over the past 20 years, our family has weathered some pretty tough storms, and as we look forward I am sure we will face many more. But I am going to be completely honest, right now is one of the roughest we have ridden out.
We have been home three days from Chicago, where Kenny had tongue flap surgery at Shriner's. I have wanted to write a blog post since we were there, but words haven't come, and exhausted has been such that I am simply trying to keep putting one foot in front of the other. I hope this post doesn't come across as one big Whine Fest, but right now my heart is not in a terrific place.
The day of surgery, Kenny was actually doing far better than he usually does emotionally. He was calmer, certain of his decision, and ready for the next three weeks to begin. Things went downhill from there. We arrived at 7:00 AM as directed, only to end up waiting for the actual surgery to begin at 3:00 PM. This was torturous, and did nothing to ease his mind. Unlike in years past, specialist after specialist traipsed through his room, asked the same questions, and seemingly had no answers to our questions. We had been given NO information prior to our arrival other than "he will have tongue flap surgery", and we didn't quite know what to expect. It was as if the right hand didn't know what the left hand was doing, and communication between the team felt non-existent, including the surgeon who came in and acted as if they still weren't certain up until that morning that the surgery was even going to happen, as they had consulted with others trying to find an alternative...but of course had never passed that information on to us.
I had come armed with xrays from his dentist, as sadly, after his braces came off three weeks ago it was discovered that his top front two teeth will not be able to be saved and are rotted to the point they will have to be removed. He is already missing one tooth on the right, next to these two teeth, and his dentist also said it appears the bone is too weak under those two teeth and he may need additional bone grafting at that location in addition to the bone grafting that will need to be done for the first missing tooth. Now, mind you, Kenny has already had over 12 teeth removed, was born with additional molars and five wisdom teeth. He has already had two painful bone grafts in two different surgeries where they pulled the needed bone from his hip. The original plan was to use cadaver bone this time around for the small spot where his one missing tooth is, but now that plan may change and we still don't know if cadaver bone will be used, or if the larger graft needed now necessitates grafting from the hip again, which is an entirely different level of pain...it takes about a month for the hip to heal.
I had attempted to call the hospital twice before our arrival and never heard back from anyone, and now, when I tried to ascertain who needed this new information, each person passed the buck to the next person, and no one seemed to know who was going to make decisions around this, nor who needed the xrays and documentation I brought. It was incredibly frustrating, and eventually after talking to no less than 5 or 6 people I was given the card of one of the team members and told I could call this week to find out what was going on after a consultation with the prosthodontist...but no one would likely call me, I would have to chase it down.
Thankfully, we had Ruby, our pre-op nurse for every single surgery, and she is a gem. She was as frustrated as we were over the scheduling, the obvious lack of communication, and did her best to help.
Kenny has a childlike quality to him at times, his FASD reflected in his mixed maturity in various settings. Sometimes he is 30 years old, and sometimes he is 10 years old. During stressful times, he reverts to a much younger version of himself as nerves take hold of him and anxiety sets in. He proudly brought and wore his Shriner fez, and he was very much like a young boy showing off a new costume. The staff was very sweet with him, and many made a huge deal over having never worked on a Shriner before, which made him very proud.
Finally, he was taken back for surgery and it took about 3 hours, where they took a flap cut from the center of his tongue, curled it up and attached it to the roof of his mouth to close his fistula (the hole in the roof of his palate.) It is as awful as it sounds, honestly. This remains attached for 3 weeks, when we return and they release the flap, and it becomes a living tissue "patch". When we had discussed this during his team meeting in the fall, they tried to convince him he should just live with a plastic obturator for the rest of his life, which is essentially sort of like a retainer with the plastic piece against the palate sealing the hole. This is not unheard of, and does keep kids from having to go through this surgery. Kenny has had several attempts at closing his palate and there was too much scar tissue built up to keep trying other methods. Kenny immediately decided he would rather have the surgery for a permanent fix, as he plans on doing a lot of public speaking and wants to sound as natural as possible. He also is very tired of food and liquids escaping through the hole into his sinus cavity, With his memory issues, he also envisioned losing an obturator frequently, and didn't want to have a device to keep track of for the rest of his life...he has a hard enough time keep track of a regular retainer.
Coming out of surgery and seeing him in post-op was the worst I have ever seen him through all the surgery. There seemed to be confusion about whether he was coming to the ICU or not, for some unknown reason, and he was not hooked up to pain meds initially. He was sobbing as we arrived, (Candi was with us for this surgery, thankfully), in a great deal of pain, was very scared as they left an intubation tube in his nose which he had been specifically told would NOT be there when he woke up, and he couldn't speak, of course. I tried to calm him down as best I could and he asked to write notes and scrawled, "Wasn't worth it" through his pitiful cries. He was thrashing in bed, obviously in very clear emotional and physical distress. Man, I almost lost it. I can't begin to tell you how that hurt, as he was in bed suffering so much pain and confusion. Kenny is not a rookie at surgery, and to have him say that broke my heart into a million pieces. Somehow, I kept it together, and we got the nurses to get him hooked up to pain meds, so that within a couple hours he was calmer and more able to handle the pain.
This is the reality of surgery for Kenny, and I share this photo to make this real, because he often smiles for photos in hospital beds, leading others to believe it is far easier than it actually is:
That is a far cry from this post-op photo:
And he crashed right after taking this. Kenny is the sweetest, kindest young man anyone would ever want to parent. Even as he was in so much distress immediately post-op he kept wrote, "I am sorry" to the nurses and "Thank you". One of the nurses who helped him pre-op phoned me mid-surgery to update me, and spoke for about five minutes about what a delightful teen he was, how she was so glad she got to meet him pre-op and see what his personality was like, and that he was so courteous and quite a kid. He has a gentleness to him that is unusual in young men his age, and again, that childlike quality at moments that is endearing. It makes it harder to see him in pain.
Kenny had great concern around his breathing the first couple of days. He has never breathed normally through his nose, and with his mouth somewhat blocked by the tongue flap he struggled to breath, though he was getting enough oxygen. It made him very anxious for the first two days, but eventually settled down and he began to understand what his new normal would feel like.
Home has been a challenge, as with his FASD, anesthesia seems to cause a lack of clarity and greater inability to make good decisions.. If he isn't watched closely, he can be a danger to himself. He is on a full liquid diet, yet in front of everyone tried to grab a banana and eat it...he simply didn't connect that he would choke on it. He isn't capable of managing his pain meds on his own, despite appearing very lucid. He is confused a lot right now, but overall healing is going well.
He is also in tears as it is frustrating to not eat, to be unable to easily communicate, and to have experienced this insult to his body. Last night as he slowly slurped soup, he started crying out of nowhere, and holding him in my arms I ached to make it all better and yet can't...we just have to muscle through this period of time.
I reminded him of our family motto, "Hard isn't bad, hard is just hard." and perhaps I need to have this taped to my own forearm as a reminder to myself. This is honestly the hardest time I have had in my own life since Josh first came home with Reactive Attachment Disorder. I have been experiencing enormous swings with my thyroid meds and tests, leaving me emotionally more unstable, menopause is leaving me with sleep issues that are extreme...I am awake no less than 5 times a night, and 7-8 times is not at all out of the norm. I am utterly, thoroughly exhausted and feel like it is a great effort to make it through the day. School is not being attended to the way I want it to be, as there is simply too much going on, thought admittedly my standards are far higher than some. Thankfully, I have these amazing, awesome, terrific, fabulous young adults who work well unsupervised, would never take advantage of a situation, and do their best to help in any way possible and support me. But right now, I have nothing to offer my friends, many of whom I haven't been able to get together with in a long while, I have nothing to offer my faith community, I have nothing to offer to my family at the level of depth I prefer. It is all just in dribs and drabs, doing the best I can to keep upright, and I am doing a pretty crappy job at just about everything.
As we also have a gazillion things to do to get Buckaroos up and running, and to teach about business, nothing is getting the attention it deserves, especially Dominick, Matt and Josh. I feel horribly about having so little time for them, and honestly, like a total failure right now. Matt will be leaving for the entire summer, pretty much, as he serves as a camp counselor and heads to The Netherlands, and I really treasure our relationship and want to spend some time with him, just chatting, learning what he is working on in school, discussing the deeper things of life he tends to save for conversation just with me. I miss Josh and his bouncy, 16 year old self, and feel like he is getting the short end of the stick right now more than anyone. He is SUCH a man these days, and is helping with the physical work at Buckaroos without complaint and with no reward for himself personally. I want to be present for every moment to say goodbye to the little boy as he gradually is slipping away. Dominick and I are on the fly and rarely have a moment alone right now. Basically, I feel completely disconnected from my own life.
It has been a long and harrowing year for me, beginning really with this past July and mom's move to the nursing home, getting her place emptied and sold, dealing with paperwork for Medi-Cal and more. I feel like it has been almost non-stop for me, and it is taking a huge toll right now. I am grateful to have the kind of friend I have in Candi, who shows up for the hard stuff. I am grateful to have the support of prayer from people at church who really care. I am grateful to have the faith I have that somehow, I will come through this stage of life intact and that there is indeed an "end" to the current madness of the past several months. And I am beyond grateful to walk through life with the particular family I have, who are actively loving, thoughtful, and hard working individuals and a team like no other.
We have an unexpectedly longer trip of 10 days to Chicago in a week and a half, where Kenny will see a specialist a few days prior to surgery. His surgeon admitted that we had made the right call on this surgery, as his palate didn't have just one hole, but was "swiss cheese" as she described it once they got in and started working. Now we have to determine what steps are next, how much bone grafting to do, whether the top front teeth will come out during this next surgery, and more. We are up against time as Shriner's only treats until you are 21 years old, and Kenny turns 21 in November. Where we were once told they would finish any uncompleted work, that now appears not to be the case, so there is a sense of urgency around decisions now. Kenny is also extremely upset about having to walk into adulthood with no front teeth for several months as he waits for the process for implants and healing of bone grafting, and that is profoundly upsetting to him. It is highly likely, as his orthodontist told us, that he can not wear any sort of prosthetic during that time.
We would appreciate any prayers, light, and love sent our way right now. It feels personally to me like the kind of long, slow slog I might not make it through. Oh, I know I can, but it FEELS very, very challenging right now. Too many things going on in too many directions with too much riding on it all financially, emotionally, and more. Too many hearts needing encouragement in my life, and not enough of me to go around.
This is hard. We LaJoy's "do hard" pretty darned well, but right now it feels almost impossibly heavy.
We have been home three days from Chicago, where Kenny had tongue flap surgery at Shriner's. I have wanted to write a blog post since we were there, but words haven't come, and exhausted has been such that I am simply trying to keep putting one foot in front of the other. I hope this post doesn't come across as one big Whine Fest, but right now my heart is not in a terrific place.
The day of surgery, Kenny was actually doing far better than he usually does emotionally. He was calmer, certain of his decision, and ready for the next three weeks to begin. Things went downhill from there. We arrived at 7:00 AM as directed, only to end up waiting for the actual surgery to begin at 3:00 PM. This was torturous, and did nothing to ease his mind. Unlike in years past, specialist after specialist traipsed through his room, asked the same questions, and seemingly had no answers to our questions. We had been given NO information prior to our arrival other than "he will have tongue flap surgery", and we didn't quite know what to expect. It was as if the right hand didn't know what the left hand was doing, and communication between the team felt non-existent, including the surgeon who came in and acted as if they still weren't certain up until that morning that the surgery was even going to happen, as they had consulted with others trying to find an alternative...but of course had never passed that information on to us.
I had come armed with xrays from his dentist, as sadly, after his braces came off three weeks ago it was discovered that his top front two teeth will not be able to be saved and are rotted to the point they will have to be removed. He is already missing one tooth on the right, next to these two teeth, and his dentist also said it appears the bone is too weak under those two teeth and he may need additional bone grafting at that location in addition to the bone grafting that will need to be done for the first missing tooth. Now, mind you, Kenny has already had over 12 teeth removed, was born with additional molars and five wisdom teeth. He has already had two painful bone grafts in two different surgeries where they pulled the needed bone from his hip. The original plan was to use cadaver bone this time around for the small spot where his one missing tooth is, but now that plan may change and we still don't know if cadaver bone will be used, or if the larger graft needed now necessitates grafting from the hip again, which is an entirely different level of pain...it takes about a month for the hip to heal.
I had attempted to call the hospital twice before our arrival and never heard back from anyone, and now, when I tried to ascertain who needed this new information, each person passed the buck to the next person, and no one seemed to know who was going to make decisions around this, nor who needed the xrays and documentation I brought. It was incredibly frustrating, and eventually after talking to no less than 5 or 6 people I was given the card of one of the team members and told I could call this week to find out what was going on after a consultation with the prosthodontist...but no one would likely call me, I would have to chase it down.
Thankfully, we had Ruby, our pre-op nurse for every single surgery, and she is a gem. She was as frustrated as we were over the scheduling, the obvious lack of communication, and did her best to help.
Finally, he was taken back for surgery and it took about 3 hours, where they took a flap cut from the center of his tongue, curled it up and attached it to the roof of his mouth to close his fistula (the hole in the roof of his palate.) It is as awful as it sounds, honestly. This remains attached for 3 weeks, when we return and they release the flap, and it becomes a living tissue "patch". When we had discussed this during his team meeting in the fall, they tried to convince him he should just live with a plastic obturator for the rest of his life, which is essentially sort of like a retainer with the plastic piece against the palate sealing the hole. This is not unheard of, and does keep kids from having to go through this surgery. Kenny has had several attempts at closing his palate and there was too much scar tissue built up to keep trying other methods. Kenny immediately decided he would rather have the surgery for a permanent fix, as he plans on doing a lot of public speaking and wants to sound as natural as possible. He also is very tired of food and liquids escaping through the hole into his sinus cavity, With his memory issues, he also envisioned losing an obturator frequently, and didn't want to have a device to keep track of for the rest of his life...he has a hard enough time keep track of a regular retainer.
Coming out of surgery and seeing him in post-op was the worst I have ever seen him through all the surgery. There seemed to be confusion about whether he was coming to the ICU or not, for some unknown reason, and he was not hooked up to pain meds initially. He was sobbing as we arrived, (Candi was with us for this surgery, thankfully), in a great deal of pain, was very scared as they left an intubation tube in his nose which he had been specifically told would NOT be there when he woke up, and he couldn't speak, of course. I tried to calm him down as best I could and he asked to write notes and scrawled, "Wasn't worth it" through his pitiful cries. He was thrashing in bed, obviously in very clear emotional and physical distress. Man, I almost lost it. I can't begin to tell you how that hurt, as he was in bed suffering so much pain and confusion. Kenny is not a rookie at surgery, and to have him say that broke my heart into a million pieces. Somehow, I kept it together, and we got the nurses to get him hooked up to pain meds, so that within a couple hours he was calmer and more able to handle the pain.
This is the reality of surgery for Kenny, and I share this photo to make this real, because he often smiles for photos in hospital beds, leading others to believe it is far easier than it actually is:
That is a far cry from this post-op photo:
Kenny had great concern around his breathing the first couple of days. He has never breathed normally through his nose, and with his mouth somewhat blocked by the tongue flap he struggled to breath, though he was getting enough oxygen. It made him very anxious for the first two days, but eventually settled down and he began to understand what his new normal would feel like.
Home has been a challenge, as with his FASD, anesthesia seems to cause a lack of clarity and greater inability to make good decisions.. If he isn't watched closely, he can be a danger to himself. He is on a full liquid diet, yet in front of everyone tried to grab a banana and eat it...he simply didn't connect that he would choke on it. He isn't capable of managing his pain meds on his own, despite appearing very lucid. He is confused a lot right now, but overall healing is going well.
He is also in tears as it is frustrating to not eat, to be unable to easily communicate, and to have experienced this insult to his body. Last night as he slowly slurped soup, he started crying out of nowhere, and holding him in my arms I ached to make it all better and yet can't...we just have to muscle through this period of time.
I reminded him of our family motto, "Hard isn't bad, hard is just hard." and perhaps I need to have this taped to my own forearm as a reminder to myself. This is honestly the hardest time I have had in my own life since Josh first came home with Reactive Attachment Disorder. I have been experiencing enormous swings with my thyroid meds and tests, leaving me emotionally more unstable, menopause is leaving me with sleep issues that are extreme...I am awake no less than 5 times a night, and 7-8 times is not at all out of the norm. I am utterly, thoroughly exhausted and feel like it is a great effort to make it through the day. School is not being attended to the way I want it to be, as there is simply too much going on, thought admittedly my standards are far higher than some. Thankfully, I have these amazing, awesome, terrific, fabulous young adults who work well unsupervised, would never take advantage of a situation, and do their best to help in any way possible and support me. But right now, I have nothing to offer my friends, many of whom I haven't been able to get together with in a long while, I have nothing to offer my faith community, I have nothing to offer to my family at the level of depth I prefer. It is all just in dribs and drabs, doing the best I can to keep upright, and I am doing a pretty crappy job at just about everything.
As we also have a gazillion things to do to get Buckaroos up and running, and to teach about business, nothing is getting the attention it deserves, especially Dominick, Matt and Josh. I feel horribly about having so little time for them, and honestly, like a total failure right now. Matt will be leaving for the entire summer, pretty much, as he serves as a camp counselor and heads to The Netherlands, and I really treasure our relationship and want to spend some time with him, just chatting, learning what he is working on in school, discussing the deeper things of life he tends to save for conversation just with me. I miss Josh and his bouncy, 16 year old self, and feel like he is getting the short end of the stick right now more than anyone. He is SUCH a man these days, and is helping with the physical work at Buckaroos without complaint and with no reward for himself personally. I want to be present for every moment to say goodbye to the little boy as he gradually is slipping away. Dominick and I are on the fly and rarely have a moment alone right now. Basically, I feel completely disconnected from my own life.
It has been a long and harrowing year for me, beginning really with this past July and mom's move to the nursing home, getting her place emptied and sold, dealing with paperwork for Medi-Cal and more. I feel like it has been almost non-stop for me, and it is taking a huge toll right now. I am grateful to have the kind of friend I have in Candi, who shows up for the hard stuff. I am grateful to have the support of prayer from people at church who really care. I am grateful to have the faith I have that somehow, I will come through this stage of life intact and that there is indeed an "end" to the current madness of the past several months. And I am beyond grateful to walk through life with the particular family I have, who are actively loving, thoughtful, and hard working individuals and a team like no other.
We have an unexpectedly longer trip of 10 days to Chicago in a week and a half, where Kenny will see a specialist a few days prior to surgery. His surgeon admitted that we had made the right call on this surgery, as his palate didn't have just one hole, but was "swiss cheese" as she described it once they got in and started working. Now we have to determine what steps are next, how much bone grafting to do, whether the top front teeth will come out during this next surgery, and more. We are up against time as Shriner's only treats until you are 21 years old, and Kenny turns 21 in November. Where we were once told they would finish any uncompleted work, that now appears not to be the case, so there is a sense of urgency around decisions now. Kenny is also extremely upset about having to walk into adulthood with no front teeth for several months as he waits for the process for implants and healing of bone grafting, and that is profoundly upsetting to him. It is highly likely, as his orthodontist told us, that he can not wear any sort of prosthetic during that time.
We would appreciate any prayers, light, and love sent our way right now. It feels personally to me like the kind of long, slow slog I might not make it through. Oh, I know I can, but it FEELS very, very challenging right now. Too many things going on in too many directions with too much riding on it all financially, emotionally, and more. Too many hearts needing encouragement in my life, and not enough of me to go around.
This is hard. We LaJoy's "do hard" pretty darned well, but right now it feels almost impossibly heavy.
