You may or may not be aware that our youngest son, Noah, was born with club feet. Here is Noah when he first came home, before work began to correct his feet.
When he was only six days old, we took him to Scottish Rite in Dallas. We were advised that he had a pretty severe case of club feet. On a scale of 1-20, with 20 being the worst, Noah was rated at 16. The doctors at Scottish Rite said the worst they had ever seen was an 18. They immediately began a process known as serial casting to straighten his feet. They stretched his feet as far as they reasonably could and then placed a cast on him from hip to toes. This made his very uncomfortable for the first day following each casting and involved some pain as well. Imagine moving your foot as far as it will stretch in a certain direction and then putting a cast to stay in that position.Each week we would take him to the hospital and they would remove the cast, check his feet for progress, then repeat the process. We did a series of four castings before moving to the next phase of treatment.The interesting thing to note, if you aren't aware, is that Scottish Rite is a charity-driven hospital. Every cast, surgery, shoe, doctor visits, X-ray, appointment, fitting, etc. was completely free to us. Each year, we make it a point to give back to Scottish Rite as we want them to be able to help others the way they have helped our son so far.
This is a picture of Noah right after he had his surgery in December, after four weeks of serial casting. The surgery was what they call a "heel clip" surgery, in which they clip the Achilles tendon on both legs and cast him again from his hips to toes for four weeks. After the surgery, the tendons grow back longer than before, allowing his feet to be in the correct position. I'm not sure how it works or who was the first "volunteer" for this procedure, but thankful that the process does indeed work.
After the casts were removed following the surgery, Noah began wearing a brace, which he wore around the clock (seen in this picture of him when he was about 3 months old). We only took it off for baths or a change of clothes. During the first year or so, he could have a 15 minute break twice daily in which we would leave the braces off. A few months prior to him turning 2 years old, we were able to lengthen that period until the final few months in which he only wore the brace during his naps and at night.
This is a picture of Noah right after he had his surgery in December, after four weeks of serial casting. The surgery was what they call a "heel clip" surgery, in which they clip the Achilles tendon on both legs and cast him again from his hips to toes for four weeks. After the surgery, the tendons grow back longer than before, allowing his feet to be in the correct position. I'm not sure how it works or who was the first "volunteer" for this procedure, but thankful that the process does indeed work.
After the casts were removed following the surgery, Noah began wearing a brace, which he wore around the clock (seen in this picture of him when he was about 3 months old). We only took it off for baths or a change of clothes. During the first year or so, he could have a 15 minute break twice daily in which we would leave the braces off. A few months prior to him turning 2 years old, we were able to lengthen that period until the final few months in which he only wore the brace during his naps and at night.
Noah is 7 months old here in the picture below with his braces. As you can tell from this picture and the other with his braces, they made him a very grouchy, cranky and just all-around unhappy baby. :) He was an absolute trooper and took it all in stride - we were continually amazed at his demeanor.
When Noah was a year old, we took his braces off for this picture. You can see his feet already look very normal in this picture, although he would continue to wear his brace until he was 2 years old.
When Noah was a year old, we took his braces off for this picture. You can see his feet already look very normal in this picture, although he would continue to wear his brace until he was 2 years old.
Here is another picture of his, this time at 3 years old and as you can see his feet look great.
It was shortly after this time, after being in denial for a bit, we came to the realization that his feet were beginning to regress and turn inward again, especially his right foot. The doctors had told us that it was possible this might happen. We took him in for a doctor visit and they agreed that they had regressed and would require additional surgery. However, they wanted to wait about a year if possible prior to performing the surgery, as they had learned over the years to minimize the number of surgeries performed.Over the course of 2009 into early 2010, his feet continued to have a more pronounced regression. He began walking on the outside of his feet, but on his outside toes, especially significant on his right foot. When he walks or runs, he doesn't touch his heel or even the majority of his feet to the ground, just his outside toes. This is due to two major areas of concern:
- His Achilles tendon is once again too tight to allow him to place his foot flat on the ground and
- The muscle/tendon in his arch is also far too tight, which gives him an extremely high arch, impacting his ability to put his foot flat on the ground.
This month, April 2010, we went to our follow-up appointment at Scottish Rite and the thing that sticks out in my mind is the doctor saying that he is "baffled" at the amount of regression. He said that it's extremely rare for a case in which they have appeared to have been fully corrected to regress as much as they have. They have seen at times some levels of regression, but not to this extent. Not a word you want to hear expressed from the doctor of your child. He stated once again that we are definitely due for another surgery to correct the structure of his foot. But prior to moving forward with that surgery, he wants Noah to visit a neurologist, who will do an MRI on his spine and legs (possibly his brain) to see if they notice anything that might be a root cause in the amount of regression seen (a weak muscle, etc.). This would also involve another test in which they look at reflexes, nerves, etc. in an attempt to find any underlying issue.
While it's rare they actually find anything, if they do it might change the gameplan on the surgery necessary. For example, they might have to look at moving a muscle to another position in order to help compensate for a weak muscle's deficiency. In addition, they would have to perform the originally planned surgery, which would involve another "heel clip" on the Achilles tendon to "relax" or lengthen it as well as taking the same approach in the arch of the feet to "relax" or lengthen that muscle. After this surgery, he will at least be in walking casts for some time, but this may depend on what they find during the investigation into root cause and where that leads.
While it's rare they actually find anything, if they do it might change the gameplan on the surgery necessary. For example, they might have to look at moving a muscle to another position in order to help compensate for a weak muscle's deficiency. In addition, they would have to perform the originally planned surgery, which would involve another "heel clip" on the Achilles tendon to "relax" or lengthen it as well as taking the same approach in the arch of the feet to "relax" or lengthen that muscle. After this surgery, he will at least be in walking casts for some time, but this may depend on what they find during the investigation into root cause and where that leads.
They anticipate that his surgery will occur sometime this summer. In the meantime, we ask for your prayers - not only for the actual surgery but for the neurology visits over the next few months. One part of me hopes they don't find anything... But on the other hand, if there is some underlying cause that will only cause it to recur again later, I pray they do find it and are able to address it now.
By the way, we are part of a study at Scottish Rite, in which we will periodically take Noah in for review so they can further document results and progress. At this point, it is unknown whether club feet is hereditary, caused by positioning in the womb or some other reason.
Update (7/3): During the first neurologist visit, in which they did an MRI on his spine and brain, they advised us that everything looked good. They didn't find anything abnormal or any concern that would leave them to believe there was any medical condition with either that was causing the regression in his feet. We now have our next appointment on July 14, where they will put him under and run a series of tests on his muscles, reflexes and nerves to determine if there is any muscle deficiency or any other condition that might impact the way his muscles and nerves perform. For example, if they find a muscle deficiency, it might require some realignment of another muscle during surgery to help compensate. We are still hoping to have the surgery scheduled sometime in August.The fun part about this (sarcasm) is that we've discovered he will be in the hospital for several days after the surgery (no surprise), but that while he is in the hospital, he will have an epidural. That thought just really freaks me out as I don't even like the idea of Tammy having one of those when the kids were born. Also, they have discussed with us that regardless of the outcome of the neurology appointments, the surgery may also require some bone restructuring. We hope this isn't the case, but are preparing ourselves for it. In addition, they did advise that after leaving the hospital, he will be confined to a wheelchair for about 4-6, with casts on both legs - all during Tammy's last trimester for her pregnancy. That's going to make for some challenges, to say the least. They did give us the option of doing one leg at a time, but we quickly decided that wasn't the best option. For one, that would stretch out the process past the birth of the new baby, making things that much more challenging. In addition, I just can't fathom the thought of telling him something like, "Hey Noah, remember all the fun we had with your right leg and foot - the pain and the cast, etc.? Well guess what? Now, we're going to do it all over again on your left leg? Isn't that exciting?? Whoo-hoo!!" For some reason, I'm not optimistic that would go over too well. I'll update this post again after the findings from our July doctor visit.
Update (8/8): We had our final neurologist visit, in which they performed the muscle/nerve/reflex testing. Everything went well and the neurologist stated that everything was good and that they didn't detect any muscle or nerve disease or deficiencies. While that's a relief as there could have been significant issues, we're still in the unknown as to what the root cause is that caused his feet to regress as much as they have. However, as Noah's case of club feet was pretty severe to begin with, it's entirely possible that's the reason for the regression.We now have a date scheduled for his operation, September 7. It's much later than we had hoped for, as that's in Tammy's final months of pregnancy and puts us approximately five weeks from when we expect to have the baby. So with the expectation for Noah to be in a wheelchair and casts for 4-6 weeks and then in walking boots for some time after that, the logistics of it all are a bit overwhelming. But we are working out arrangements for a support system to help us out. We could wait until several months after the baby, but based on how much further his feet have regressed than when we first took him in April, we feel that it can't wait longer. He's such a bundle of energy and nothing keeps him down, but he complains frequently about his feet - even when he's just standing for a few minutes. Often times, I now have to carry him, especially if we have been doing something active for a while - i.e. the park, riding bicycles, etc. When he sits down because his feet hurt, it doesn't take him long before he feels he is ready to go again. But watching him then limp off, I know they still hurt him but he's just doing his best to fight through the pain.Please keep us in your prayers as we head into this. I anticipate that the odds for another regression will be about the same as they originally gave us after he was born (which is about 50/50). <Update: The doctor actually told us after the surgery that the chance of regression is actually less and he now has about a 30% chance that his feet may regress again> We pray that this surgery will go well and will be the last surgery that he has to have to correct the club feet.
Update (8/11): So a LOT has happened since my
post on Sunday. On Monday morning, we received a call from Scottish
Rite advising us that they had a cancellation and could get Noah in for
surgery on Tuesday. At first, as we had logistically worked out
everything for September 7th, our initial thought was no way. But after
making numerous calls to my parents, my boss, Tammy's sister, etc., we
decided to move forward with it. Of course, we weren't mentally
prepared, but I'm not certain we would have been mentally prepared on
Sept 7 anyway. So we went in on Monday and spent the rest of the day
doing admission activities. We had to be at the hospital before 6 am on
Tuesday and they took Noah back at 8:00. They expected about 3 1/2 hrs
for the total surgery, but it ended up taking nearly 4 hours. The right
foot alone took nearly 3 hours. It was definitely the more regressed
foot, so it's not unexpected to have taken longer. However,
we did have some good news in that they didn't end up doing as much
bonework as they had anticipated. On the right foot, they performed the
activities in succession to determine the next step. They "relaxed" the
arch in his foot, which is basically where the cut through the tendon at
an angle to lengthen it. Then thev performed the same activity on the
Achilles tendon (also known as a heel clip). This allowed a relaxation
of the arch and will allow him to be able to put his heel back on the
ground. After that, they rotate the foot to ensure that the middle toe
can align properly with the knee. If not, they take a slice of bone out
of the outside portion of the foot, allowing it to rotate to the proper
position. Luckily both feet aligned properly once they performed the
arch and Achilles parts of the surgery. This alleviated the need to
remove a portion of bone, which is what they expected to do on his right
foot. The next piece they look at is the big toe and Noah's big toe was
still too far down even after the first two phases. Thus, they had to
remove a section of bone out of his big toe and then pull the toe up for
proper alignment and place pins in his toe to hold it in place. They
only did this on the right foot. After that, they performed the first
two steps on the left foot and were done. Piece of cake, huh? He is
currently wearing partials splints on each leg, up to mid-thigh. There
are two reasons for this: 1. They are monitoring for swelling prior to
placing on a final cast. 2. His right foot is not yet in proper
position. Because his right foot had regressed so much, after they
lengthened the Achilles tendon, they couldn't pull the foot into proper
position and still be able to close the incision in the skin. The skin
won't stretch that far. So they left it with it still pointing down
somewhat and hope to be able to adjust the angle properly when we come
back next Tuesday to get the casting done. 
When
we look at his splints now, they are wrapped but blood continues to
seep through. They have gauze taped to the heel of the wraps, but have
to change it and his sheets every so often due to the seepage. Once I
expressed concern about the amount of blood, but both the nurses and the
doctor said that was typical and nothing to be concerned about. Sure
looks like a lot to me....The true blessing here is that pain management
has been really great. He has an epidural in his spine, but they have
not had to adjust or change the medication to compensate for pain. Noah
has not once complained about pain in his feet. Even the nurses are
surprised by that. He has been such a trooper and has wonderful spirits
and we have heard from several nurses that thru wish all their patients
were like him. He slept very well last night, only waking up once when
he threw up on the bed. 
This
morning, he had some visitation from some "therapy dogs", where they
brought in three dogs to pet and talk to. It was wonderful as Noah
absolutely loves dogs. He also got to sit in his wheelchair for the
first time. It's cute - just his size and has a smiley face on it. The
only concern he had about it - "Daddy how will I ever get to play again
if I have to be in this.". That almost got to me, but knowing this is
just a temporary thing made it easy enough to answer. The only thing is
that he doesn't understand the passing of time, so saying six weeks
doesn't quite pacify his concern. Luckily he remembers his brother in a
cast last year when he broke his arm. So I compared it to that. He will
have the left cast about four weeks and expect the right to be in a cast
for six weeks due to the bone work done. Each leg is cast with knees
bent to allow proper healing but also discourage standing or walking as
he must refrain from putting any weight on the feet.
On Thursday, they plan to turn off the epidural and start giving him oral pain meds to see how he does. If he does well, they will remove the epidural and we may get to go home that afternoon. But I'm not rushing it as I want to ensure from a pain perspective that he's good before we leave.
Update (7/3): During the first neurologist visit, in which they did an MRI on his spine and brain, they advised us that everything looked good. They didn't find anything abnormal or any concern that would leave them to believe there was any medical condition with either that was causing the regression in his feet. We now have our next appointment on July 14, where they will put him under and run a series of tests on his muscles, reflexes and nerves to determine if there is any muscle deficiency or any other condition that might impact the way his muscles and nerves perform. For example, if they find a muscle deficiency, it might require some realignment of another muscle during surgery to help compensate. We are still hoping to have the surgery scheduled sometime in August.The fun part about this (sarcasm) is that we've discovered he will be in the hospital for several days after the surgery (no surprise), but that while he is in the hospital, he will have an epidural. That thought just really freaks me out as I don't even like the idea of Tammy having one of those when the kids were born. Also, they have discussed with us that regardless of the outcome of the neurology appointments, the surgery may also require some bone restructuring. We hope this isn't the case, but are preparing ourselves for it. In addition, they did advise that after leaving the hospital, he will be confined to a wheelchair for about 4-6, with casts on both legs - all during Tammy's last trimester for her pregnancy. That's going to make for some challenges, to say the least. They did give us the option of doing one leg at a time, but we quickly decided that wasn't the best option. For one, that would stretch out the process past the birth of the new baby, making things that much more challenging. In addition, I just can't fathom the thought of telling him something like, "Hey Noah, remember all the fun we had with your right leg and foot - the pain and the cast, etc.? Well guess what? Now, we're going to do it all over again on your left leg? Isn't that exciting?? Whoo-hoo!!" For some reason, I'm not optimistic that would go over too well. I'll update this post again after the findings from our July doctor visit.
Update (8/8): We had our final neurologist visit, in which they performed the muscle/nerve/reflex testing. Everything went well and the neurologist stated that everything was good and that they didn't detect any muscle or nerve disease or deficiencies. While that's a relief as there could have been significant issues, we're still in the unknown as to what the root cause is that caused his feet to regress as much as they have. However, as Noah's case of club feet was pretty severe to begin with, it's entirely possible that's the reason for the regression.We now have a date scheduled for his operation, September 7. It's much later than we had hoped for, as that's in Tammy's final months of pregnancy and puts us approximately five weeks from when we expect to have the baby. So with the expectation for Noah to be in a wheelchair and casts for 4-6 weeks and then in walking boots for some time after that, the logistics of it all are a bit overwhelming. But we are working out arrangements for a support system to help us out. We could wait until several months after the baby, but based on how much further his feet have regressed than when we first took him in April, we feel that it can't wait longer. He's such a bundle of energy and nothing keeps him down, but he complains frequently about his feet - even when he's just standing for a few minutes. Often times, I now have to carry him, especially if we have been doing something active for a while - i.e. the park, riding bicycles, etc. When he sits down because his feet hurt, it doesn't take him long before he feels he is ready to go again. But watching him then limp off, I know they still hurt him but he's just doing his best to fight through the pain.Please keep us in your prayers as we head into this. I anticipate that the odds for another regression will be about the same as they originally gave us after he was born (which is about 50/50). <Update: The doctor actually told us after the surgery that the chance of regression is actually less and he now has about a 30% chance that his feet may regress again> We pray that this surgery will go well and will be the last surgery that he has to have to correct the club feet.
Update (8/11): So a LOT has happened since my
post on Sunday. On Monday morning, we received a call from Scottish
Rite advising us that they had a cancellation and could get Noah in for
surgery on Tuesday. At first, as we had logistically worked out
everything for September 7th, our initial thought was no way. But after
making numerous calls to my parents, my boss, Tammy's sister, etc., we
decided to move forward with it. Of course, we weren't mentally
prepared, but I'm not certain we would have been mentally prepared on
Sept 7 anyway. So we went in on Monday and spent the rest of the day
doing admission activities. We had to be at the hospital before 6 am on
Tuesday and they took Noah back at 8:00. They expected about 3 1/2 hrs
for the total surgery, but it ended up taking nearly 4 hours. The right
foot alone took nearly 3 hours. It was definitely the more regressed
foot, so it's not unexpected to have taken longer. However,
we did have some good news in that they didn't end up doing as much
bonework as they had anticipated. On the right foot, they performed the
activities in succession to determine the next step. They "relaxed" the
arch in his foot, which is basically where the cut through the tendon at
an angle to lengthen it. Then thev performed the same activity on the
Achilles tendon (also known as a heel clip). This allowed a relaxation
of the arch and will allow him to be able to put his heel back on the
ground. After that, they rotate the foot to ensure that the middle toe
can align properly with the knee. If not, they take a slice of bone out
of the outside portion of the foot, allowing it to rotate to the proper
position. Luckily both feet aligned properly once they performed the
arch and Achilles parts of the surgery. This alleviated the need to
remove a portion of bone, which is what they expected to do on his right
foot. The next piece they look at is the big toe and Noah's big toe was
still too far down even after the first two phases. Thus, they had to
remove a section of bone out of his big toe and then pull the toe up for
proper alignment and place pins in his toe to hold it in place. They
only did this on the right foot. After that, they performed the first
two steps on the left foot and were done. Piece of cake, huh? He is
currently wearing partials splints on each leg, up to mid-thigh. There
are two reasons for this: 1. They are monitoring for swelling prior to
placing on a final cast. 2. His right foot is not yet in proper
position. Because his right foot had regressed so much, after they
lengthened the Achilles tendon, they couldn't pull the foot into proper
position and still be able to close the incision in the skin. The skin
won't stretch that far. So they left it with it still pointing down
somewhat and hope to be able to adjust the angle properly when we come
back next Tuesday to get the casting done. 
When
we look at his splints now, they are wrapped but blood continues to
seep through. They have gauze taped to the heel of the wraps, but have
to change it and his sheets every so often due to the seepage. Once I
expressed concern about the amount of blood, but both the nurses and the
doctor said that was typical and nothing to be concerned about. Sure
looks like a lot to me....The true blessing here is that pain management
has been really great. He has an epidural in his spine, but they have
not had to adjust or change the medication to compensate for pain. Noah
has not once complained about pain in his feet. Even the nurses are
surprised by that. He has been such a trooper and has wonderful spirits
and we have heard from several nurses that thru wish all their patients
were like him. He slept very well last night, only waking up once when
he threw up on the bed. 
This
morning, he had some visitation from some "therapy dogs", where they
brought in three dogs to pet and talk to. It was wonderful as Noah
absolutely loves dogs. He also got to sit in his wheelchair for the
first time. It's cute - just his size and has a smiley face on it. The
only concern he had about it - "Daddy how will I ever get to play again
if I have to be in this.". That almost got to me, but knowing this is
just a temporary thing made it easy enough to answer. The only thing is
that he doesn't understand the passing of time, so saying six weeks
doesn't quite pacify his concern. Luckily he remembers his brother in a
cast last year when he broke his arm. So I compared it to that. He will
have the left cast about four weeks and expect the right to be in a cast
for six weeks due to the bone work done. Each leg is cast with knees
bent to allow proper healing but also discourage standing or walking as
he must refrain from putting any weight on the feet.
On Thursday, they plan to turn off the epidural and start giving him oral pain meds to see how he does. If he does well, they will remove the epidural and we may get to go home that afternoon. But I'm not rushing it as I want to ensure from a pain perspective that he's good before we leave.
Update (8/12): We are really hoping to go home today. They started Noah on oral pain meds this morning and he's been doing very well with them. They have removed his IV and, more importantly, his epidural. That was an ordeal as there was a ton of tape all along his back up to his shoulder to ensure there was no chance that the epidural accidentally came out. Taking off all the tape was painful for Noah. Think about a huge band-aid from your shoulder down to your bottom. I was assisting in pulling the tape off and trying to distract Noah and happened to look at the wrong time when they pulled the epidural out. It is similar to an IV they put in your hand while in the hospital. It's the "catheter" portion that actually remains in the vein. However whereas the IV catheter is about an inch long, the epidural catheter was about 4 inches long and just kept coming out as they pulled on it. Made me nauseous then and gives me the creeps. After they took out all his "attachments", we put him in his wheelchair and took him to the Family Life center, which is where they have games and toys to play. Lots f fun stuff and he played with Legos for a while. We brought back a few things to the room, including Candy Land, Play-Doh and a coloring book. They even told us we could keep the Play-Doh. After we returned, I showed Noah how to push his own wheelchair. He thought that was fun and pushed himself around a bit. I think we are about ready as the pain seems manageable even without the epidural. Just waiting to see the doctor and gain concurrence.
Update (8/15): Haven't had much time to update this the last few days. But we came home Thursday evening, thank God. I can only imagine how relieved Noah was to be at home. The first night home was very rough. We gave him his pain medication at 10:00, but he couldn't go to sleep and cried and cried about his feet hurting. Tammy called the on-call nurse and while she was talking to her, Noah finally fell asleep much to our relief. However, that was short-lived as he would sleep about 10-15 minutes and then wake up crying again, saying his feet hurt too much. And all I could do was hug him and try to distract him, which didn't do a lot of good. Tammy called the nurse again and she got the doctor's advice to give Noah his next dose about two hours early. Finally, about 1:30, he fell asleep and appeared to sleep peacefully the rest of the night. For those who are parents, I know you understand all too well how heart-breaking it is when your child is in such extreme pain and there is nothing you can do for them. Such an awful feeling.
On Tuesday, we go in for another in-patient procedure. They will put him to sleep again and remove his splints, ensure all is well, move his right foot into the proper position and then put his final casts on. Noah chose purple for the color of his casts.
Update (8/29):
On Tuesday, 8/17, we took Noah in for another procedure. They put him
to sleep and removed his splints. Then they moved each of his feet
further up to place them in their proper position and casted his legs
up to mid-thigh in purple, his color choice. When they brought him out
of the operating room, we were quite surprised as he was already crying
and asking for momma. And everything went downhill from there....
He
was screaming and crying, and crying and screaming and constantly saying
his feet were hurting. The nurses gave him Lortab as well as
ibuprofen, but it seemed to do no good. Finally, the doctor came back
and checked him out, but he was stymied on why it appeared to hurt him
so much. Keep in mind that they did have to further position his feet,
especially his right foot, as in the original operation they couldn't
stitch the incision together if they pulled the foot up far enough. So
I'm sure there was some pain associated with the somewhat healed
incision, the foot in a new position it wasn't used to, the fact that
the casts are much tighter than splints and that they are much heavier
as well. However, due to his pain and tolerance level, they started
giving him several doses of morphine over the next few hours.
We
seriously considered having them admit him into the hospital overnight
so that they could administer stronger pain meds than we could at home,
but by about 5:00 p.m. he appeared to be doing pretty good and hadn't
had morphine since about Noon. We had gone in about 6:00 that morning and
should have been out by Noon, but didn't end up leaving until after 5:00
that evening.
That
first night at home was rough. All through the night, he would wake up
crying and complaining about his feet hurting, much like the first
night home from the hospital. One of the things I did notice was that
he would nod off asleep and then his leg(s) would jerk and he would
suddenly awaken crying out in pain. This reminded me a lot of when I
had broken my jaw and had my jaw wired shut for four weeks. There
wasn't a whole lot of pain, except at night for the first week or so. I
would doze off and then suddenly I would get a spasm of pain shooting
in my jaw and I would awaken crying out in pain.
The
next morning, we called the doctor and discussed the night and the
spasms. They said that was common and called in a prescription for
Valium to give him at night to hopefully relax him a bit and alleviate
the spasms and cramps. However, Wednesday night was even more
difficult. We gave him Valium at 8 p.m., then some Lortab at 10 and
ibuprofen around 11. Even so, from 8:00 on, he was constantly crying
and crying, saying his feet hurt too much. Tammy called the on-call
nurse about 1:30 and they received doctor permission to give Noah his
next Lortab dose early and he finally fell asleep (probably from pure
exhaustion) a little after 2:00 a.m. Even so, he slept fitfully the
rest of the night, tossing and turning and moaning in his sleep - at
times crying out. He was awake before 7:00, crying about his feet
again. We talked with the nurse again that morning and they advised
that if he didn't have a better day and night to bring him in on Friday
and they would determine what to do. They were considering the option
of putting him under again, removing his casts and checking his feet to
see if there was something wrong.
Thankfully
Thursday was a pretty good day, except for the fact that our air
conditioner had decided to start giving us problems and losing freon
over the course of a few days. On that day, the a/c folks received a
part that was necessary to replace on the outside unit and came by about
3:00 p.m. to start replacing it. Within an hour, it was over 80
degrees in the house and we had to bail. We went over to a friend's
house who lives in Wylie. Bill was gracious enough to leave work early
to allow us into his house, where we camped out until after 9:00 p.m.
when the a/c was fixed and the house had cooled down enough to make it
tolerable. In the meantime, Noah had fallen asleep at Bill's house
around 8:00 p.m. and despite us having to wake him up, carry him to the
car, get him home and put him down, he still had a really wonderful
night and slept throughout the night, only waking when it was time to
give him medicine. Tammy and I were tag-teaming at this point, so I
spent the night in his room and even overslept with my alarm going off -
and Noah didn't wake me up....
Friday was such a turn-around for him. He didn't complain once about his feet and his entire demeanor had changed.
It's
now been over a week since we have given him anything for pain, even
ibuprofen. He hasn't complained at all about his feet and has adjusted
very well. And he's a pro at his wheelchair. We bought some special
silver and gold markers so that as people sign his casts, it shows up
against the dark purple. One person wrote, "Always have happy feet."
We
are supposed to take him in on September 14 to remove his casts. They
will take them off, do x-rays and determine if he is good to go or if
they have to recast him on either leg. It's possible they may have to
recast him, especially on his right foot as that's the foot that
involved the bonework. We aren't telling him that he's getting his
casts off yet, as we don't want him to be disappointed if he wakes up
and has new casts on. Hopefully the healing will have gone well and he
will get to keep his casts off.
Once he does get his casts off, he will wear walking boots for several weeks.
Update (9/14): Things have been going very well the last few weeks. Noah hasn't complained at all about his feet in several weeks. We were supposed to go back this week to check his casts, but they decided to move until next Monday to do it. They will cut his casts off, remove the pin from his foot and do some x-rays. Depending on the findings in the x-ray as well as pain/discomfort level when moving the foot, they will determine whether they put him in short walking casts (the cast would come almost to the knee, but allow him to walk) or walking boots. We will see how things go. Either option will give him a lot more mobility than he has today, so we are looking forward to it for his sake. He's been such a positive little guy through all this and doesn't even complain about his mobility. He's found a way to crawl and also to do a frontward scoot that gets him around the house remarkably well.
I
wanted to add the following video to further show how he walked and how
the regression impacted his feet, specifically his right foot.
However, the shoes do tend to minimize the severity by providing him
some stability, so this isn't as significant as if he were without
shoes. Prior to his surgery, he'd gotten to the point where he couldn't
stand still in one place without his shoes. For example, if he was
being weighed on a scale he would have to hold on to someone as he could
no longer balance
Update (9/26): This past Monday, we took Noah into Scottish Rite for his follow-up appointment. But just prior to that, we had some fun over the weekend, as Noah’s pin in his right foot decided that it didn’t like it’s cozy atmosphere and wanted some fresh air. It worked itself out enough that it was sticking about an inch out beyond Noah’s casts, which wasn’t good when we needed to crawl or if he were to turn over in bed.
The
on-call doctor told us that if we brought him in, they really couldn’t
remove it completely without having all the xrays, etc and most likely
wouldn’t do it as we had an appt on Monday to get his casts off and
remove the pin. They said that they would most likely just look for a
way to pack/pad/brace it to minimize impact and even suggested looking
for a cup to put over the end of the casts. I always knew those
Dickey’s/Spring Creek BBQ cups would come in handy. Just not for
something like this.
On
Sunday evening, I took the cup off just to ensure there wasn’t
additional bleeding or any sign of infection and discovered that the pin
had worked itself completely out of his foot. So at least on Monday,
we didn’t have to get out in public looking all country with a cup
duck-taped to his foot.
At
his appointment, he had his casts removed and this picture of his foot
shows just how much work they did on his feet. I had no idea they cut
this much on his foot and both feet have the same incision line. The
incision you see in the picture goes all the way around the back of the
foot to about an inch or so on the other side of his foot – stitches the
whole way. It makes me nauseous just thinking about it, but makes me
appreciate just how much of a trooper he was through all this.
But after we got home, he got to take his first bath in 6 weeks – he was so excited about it!!
But after we got home, he got to take his first bath in 6 weeks – he was so excited about it!!
He’s
now in walking boots, but I’m sure it will take a bit before he’s
really getting around. With my help, he has walked a bit here and
there, but he is very, very wobbly - it’s like when the boys were a year
old and just learning to walk. You can tell his lower legs are
significantly smaller than prior to the casts, due to inactivity. He
hasn’t been able to utilize his legs, so he’s going to have to build up
strength. In addition, he has to deal with the stiffness in his feet
and ankles, not to mention the clunkiness of the boots to adjust to.
But I’m sure he’ll be up and around sooner than we expect, he’s shown
that in the past. He is so independent and with getting on his bed, the
couch, up to the table he now tells me he can do it himself. And he
struggles to pull himself up. But free-standing and actual walking are
still a challenge at this point, but he's getting stronger every day.
Today, he wanted to play outside and ride his bike. So I put him on it
and let him figure it out. Here's a quick clip of him, showing how
quickly he adjusted. This is great exercise for his legs.
Update (6/13): Time sure flies and I hadn't realized how long it has been since I updated this post about Noah. Almost nine months have passed, but a lot has happened since then, including our baby girl which is probably part of the reason I have been too busy to stay up-to-date on the blog.
But to update on Noah, everything is going great! We were able to successfully remove his walking boots the day before Alyssa was born and almost immediately started some tentative walking on his feet. His calves and legs were still so weak that it took a while to build up the muscles. I had to do daily exercises with him to build up the muscles that had atrophied while in the casts and walking boots.
The next few months were focused on exercises and getting lots of activity. In February, he joined soccer and played in the spring soccer league. It was absolutely amazing to see, since prior to surgery he could barely run and walking for longer than a few minutes would hurt his feet and he would need to sit down to "rest" his feet. But there he was participating in an hour-long soccer game, running in cleats with all the other boys and and not once complaining about his feet. He does still have some catching up to do as he lost more than a year in developing his running, etc. as his feet regressed. So he's not the fastest out there, but I don't care. The joy it brings to see him running and playing without pain and discomfort is hard to express in words. It doesn't matter if he isn't the fastest, the best, or even if he fails to score a point. What matters is how much fun he has playing and that is written all over his face. By the way, he didn't score any points this year, but he defended numerous goals against the other team. His nickname was Defender, as he did an excellent job seeing the game and getting back towards the goal in time to defend a score.
Here are a few pictures him playing.
We're very thankful that he is in his walking boots now and can have baths!! We think Noah is a trooper of the utmost. I'm so glad he can ride his bike. Keep up the good work.
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