Today was the big day for Kenzie as her arthrogram was scheduled to take place. We were supposed to show up at the Rocky Mountain Hospital for Children at Presbyterian/St. Luke's Hospital at 9:15 to check in. Since Sarah is irritated by late patients every damn day, we were to PSL by 8:45. You might call us punctual. We wandered into the hospital and found the Pediatric Surgery wing. It was easy to distinguish as it was the only part of the building that had any color whatsoever. It is a brand new $130M facility on the edge of the existing hospital. It was gorgeous. We check in at the front desk, wait for a little bit before we are ushered back to her pre-op room. We waited there until the doctor, her PA, and the anesthesiologist had finished their first case of the day and were ready to work on Kenzie. As we waited, Linda, Grandma, Randy, and my mom all showed up to offer their moral support. A little after 11:00, they finally took Mackenzie to the operating room and we migrated out to meet our family in the waiting area.
About a half an hour into our waiting (maybe not even that long), the doctor came out to show us an arthrogram. They had started the procedure how they normally do - they put her under, give her an IV, inject the dye into her healthy hip socket, then inject dye into her displaced hip socket. The dye allows the imaging process to clearly show the conditions of the still-developing bones. When they were able to get a better picture of her condition, they had some good news to share with us. She brought an image out for us to see that her left hip was, in fact, not dislocated. But it was not developing correctly and was in danger of coming out as she grew. I like to think of her hip socket as a trailer hitch, with the hip socket being the hitch and the femur being the ball. Right now, her hip has not moved the lever to a locked position. We need it to be locked so that she doesn't lose her trailer going 80 down I-70. Or something like that.
The result of our little chat was that she was not going to need to be in a cast. The doctor said that the goal of putting her in the cast for that first month was to get her leg to exactly where she was now. Instead of doing a cast for a month, instead she is going to be in a brace. The brace will hold her in the same position as the cast, it is just less work for us and less rigidity for her. She can still move her legs below the knees, where the cast would completely have restricted movement below the waist. We are still scheduled to come back in four weeks to do a second arthrogram to check the progress. Hopefully, the brace will allow for better hip development and we can do another month of the brace followed by a third arthrogram and a third month of the brace. If there is not an improvement with the brace this month, she will get casted next time for a month, then a third arthrogram and another month of casting. Regardless of what happens, we are probably looking at three months of the brace and/or casting and four arthrograms. We are not out of the woods yet, but things are definitely looking better now than they were even 24 hours ago.
I will admit that the time when they first took Kenzie away from us to go to the operating room was tough. We are so used to being the ones who are ultimately responsible for her health and safety that is was completely foreign to rely on anyone else for an unknown length of time. Once she was in her procedure, Sarah and I commandeered an empty pre-op room so that she could pump. When we were in there, there was a beeping noise coming from the hallway. In my naivety, I just ignored it. Sarah informed me it was a code. Talk about having your stomach drop - my daughter is currently going under general anesthesia and we are hearing a code. Stressful.
A few of Sarah's coworkers stopped by to see how we were doing and to drop off a big bag of diapers and a stuffed sheep. Apparently they don't frequent that side of PSL, because they were just as lost as we were!
When she came out of the procedure, she was awake before we could even get to the recovery room. She was not a happy camper. We tried getting her some breast milk, some Pedialite, a binky, her thumb. She wasn't taking anything. Once Sarah finally got her calmed down, I went downstairs to give our family an update and to move some stuff to the car. Since it was going to be a while before she was discharged, Linda, Grandma, and Randy said they were going to leave. My mom waited around long enough for me to get back from dropping stuff off at the car and moving it over to a closer parking spot. Randy offered to take me and my two bags over to our car since we were parked in Africa. He dropped me off, I climbed the stairs to our car. As I walked to the tailgate, I realized that I had left my keys in the diaper bag, which was sitting next to my mom on the other side of the hospital. Randy was already gone, so I lugged the bags I was carrying back to where my mom was sitting, grabbed my keys, and hiked back to the car. Like I said before, if your child is just out of surgery, you WILL forget your keys. After a quick move of the car, we were just waiting on Kenzie's discharge. We were out of there by 2:30 or so. The rest of the day was spent lounging at our house trying to get used to this new contraption on our daughter. The brace can only be removed for diaper changes and baths. Naturally, this afternoon, Kenzie decided that she was going to unleash a furious chain of bowel movements. We are already quite proficient at getting the brace on and off. Way to be a good teacher, Kenzie.
Lastly, I wanted to thank all of our friends and family for their incredible support as we embarked on this latest adventure in parenting. The outpouring of prayers and thoughts and well wishes the last week or so has been astounding. We truly appreciate having you all in our lives. It is times like this that remind us why we associate ourselves with you all. If you were jerks, we would have kicked you to the curb years ago!!
I'm sure there will be more information coming from us as this adventure continues. It is already a huge adjustment to our lives, but we try to remind ourselves that we are doing this to make her quality of life better.
Thanks again.
Mike (and Sarah)
Monday, January 24, 2011
Tuesday, January 18, 2011
Arthrogram Update and Doctor Ranting
Kenzie's Schedule:
Today we finally talked to the scheduler for the pediatric orthopedic surgeon. We are all set for the procedure to take place on Monday morning. We haven't received all the details, but it sounds like this is the general timeline:
7:30 - Kenzie has to stop eating breast milk.
9:30 - Kenzie has to stop all clear liquids.
10:00 - Check in at the Children's Hospital at Presbyterian/St. Luke's.
11:30 - Kenzie goes under general anesthesia and the procedure starts.
1:30 - The latest that Kenzie should be under general anesthesia.
?? - We take the little casted beauty back to our home.
Obviously Monday is a big day for the three of us. Please just say a quick little prayer for us before you head to work that morning. Here's hoping for a successful procedure and a quick recovery.
Mikey's Rageahol:
Clearly, receiving the news that your daughter has hip dysplasia is not an easy piece of information to swallow. The way we heard it made it much harder for Sarah and me. The first chance to catch this was during our stay at the hospital those first few days of her life. Nothing. The next opportunity came at her three day appointment in our home. The nurse practitioner who saw Sarah and Mackenzie did not catch it. Because of some concerns with Mackenzie's weight loss that first week, the nurse practitioner made a second visit to our house for a checkup at five days. Again, not caught. Our next appointment was with a doctor at two weeks. Looking back, this was our most disappointing appointment. The doctor did a terrible well-child check. It was so bad, he didn't even do a check on her hips. When we left the appointment, Sarah commented on how much of a joke the checkup was. Terribleness. When a baby is two weeks old, the tendons and ligaments in the hips are so loose that feeling for a dislocated hip is much easier. It would have been the perfect time to find the problem. Our next appointment was at two months. Here we saw our main pediatrician. As poorly as the last appointment went, we were most definitely not returning to the first doctor we saw. This doctor did a check of her hips, but at two months, the ligaments and tendons have tightened enough that diagnosing hip dysplasia is a bit harder (not to say that it shouldn't have been caught at this point).
Before Kenzie's four month appointment, Sarah had noticed that the fat rolls on her legs were different than each other. Uneven fat rolls is a sign of hip dysplasia. We also had noticed that she was only jumping on one of her legs when she was in her jumper. When we got to the appointment, we were asked if we were willing to see another doctor as our normal doctor was running very late. We agreed and saw our fourth provider. During the appointment, we brought up our concerns. The doctor took a quick look at her and informed us that it was only a developmental thing. She told us to keep an eye on it and check it again at her six month appointment. So we did. At our six month appointment, we saw our primary pediatrician again. Her fat rolls were still uneven. She was still favoring one of her legs. That doctor agreed with the previous doctor that it was a developmental issue. Thankfully, Sarah did not accept that answer. She demanded that some sort of check be implemented. After a bit of haggling, the doctor finally agreed to do an xray of her hips. Obviously the xrays showed what we had already believed - she had a hip dysplasia.
For those of you who are playing along, let's recount. There were not one, not two, not three, four, or five, not even six, but seven different opportunities for them to find the issue. It finally took an aggressive physician's assistant and a belief in something wrong for the doctors to do something. That is where our anger comes from. Let's go through the same scenario, but instead of a medically trained mother, let's assume that the parents are Joe Blow and Jane Doe. They might not have noticed the difference in the fat rolls. They might not have noticed the jumping on one leg. They might not have pointed it out to the doctor at the four month appointment. And they definitely would not have pressed the issue at the six month appointment. They would have gone along with the "expert" opinions. They would have wondered why their child was not walking or why her walk had a significant limp in it. At that point, the most likely fix is surgery to get the femoral head into the hip socket.
Thhhhhhatt's not all, folks!! There are four characteristics that are commonly associated with hip dysplasia:
1) Genetics
2) The breech position at some point during the pregnancy
3) First born child
4) Female
Again, for those of you keeping score at home, let's go through these one by one.
1) Genetics - there is no history in either of our families, could not have been foreseen. (0 for 1)
2) Kenzie was breech during our 18 week ultrasound. (1-2)
3) First born - obviously she fits this criteria. (2-3)
4) Female - um, yes. (3-4)
As a baseball numbers geek, it is easy to see that she was hitting 0.750. Those are some great numbers in favor of her hips being all jacked up. Great work doctors.
Now you can see why Sarah and I have been so upset about this situation. Instead of diagnosing the dysplasia at two weeks and being strapped up the first few months of her life, now she will be forced to be immobile during formative developmental months. She will not be crawling on schedule. She will not be walking on schedule. In a year or so, this will probably all be behind us. It is just be a small bump in an incredible life of an incredible girl. It just sucks during the present.
Thanks for all the support, all the love, and all the prayers we have received over the last few weeks.
Mike (and Sarah)
Today we finally talked to the scheduler for the pediatric orthopedic surgeon. We are all set for the procedure to take place on Monday morning. We haven't received all the details, but it sounds like this is the general timeline:
7:30 - Kenzie has to stop eating breast milk.
9:30 - Kenzie has to stop all clear liquids.
10:00 - Check in at the Children's Hospital at Presbyterian/St. Luke's.
11:30 - Kenzie goes under general anesthesia and the procedure starts.
1:30 - The latest that Kenzie should be under general anesthesia.
?? - We take the little casted beauty back to our home.
Obviously Monday is a big day for the three of us. Please just say a quick little prayer for us before you head to work that morning. Here's hoping for a successful procedure and a quick recovery.
Mikey's Rageahol:
Clearly, receiving the news that your daughter has hip dysplasia is not an easy piece of information to swallow. The way we heard it made it much harder for Sarah and me. The first chance to catch this was during our stay at the hospital those first few days of her life. Nothing. The next opportunity came at her three day appointment in our home. The nurse practitioner who saw Sarah and Mackenzie did not catch it. Because of some concerns with Mackenzie's weight loss that first week, the nurse practitioner made a second visit to our house for a checkup at five days. Again, not caught. Our next appointment was with a doctor at two weeks. Looking back, this was our most disappointing appointment. The doctor did a terrible well-child check. It was so bad, he didn't even do a check on her hips. When we left the appointment, Sarah commented on how much of a joke the checkup was. Terribleness. When a baby is two weeks old, the tendons and ligaments in the hips are so loose that feeling for a dislocated hip is much easier. It would have been the perfect time to find the problem. Our next appointment was at two months. Here we saw our main pediatrician. As poorly as the last appointment went, we were most definitely not returning to the first doctor we saw. This doctor did a check of her hips, but at two months, the ligaments and tendons have tightened enough that diagnosing hip dysplasia is a bit harder (not to say that it shouldn't have been caught at this point).
Before Kenzie's four month appointment, Sarah had noticed that the fat rolls on her legs were different than each other. Uneven fat rolls is a sign of hip dysplasia. We also had noticed that she was only jumping on one of her legs when she was in her jumper. When we got to the appointment, we were asked if we were willing to see another doctor as our normal doctor was running very late. We agreed and saw our fourth provider. During the appointment, we brought up our concerns. The doctor took a quick look at her and informed us that it was only a developmental thing. She told us to keep an eye on it and check it again at her six month appointment. So we did. At our six month appointment, we saw our primary pediatrician again. Her fat rolls were still uneven. She was still favoring one of her legs. That doctor agreed with the previous doctor that it was a developmental issue. Thankfully, Sarah did not accept that answer. She demanded that some sort of check be implemented. After a bit of haggling, the doctor finally agreed to do an xray of her hips. Obviously the xrays showed what we had already believed - she had a hip dysplasia.
For those of you who are playing along, let's recount. There were not one, not two, not three, four, or five, not even six, but seven different opportunities for them to find the issue. It finally took an aggressive physician's assistant and a belief in something wrong for the doctors to do something. That is where our anger comes from. Let's go through the same scenario, but instead of a medically trained mother, let's assume that the parents are Joe Blow and Jane Doe. They might not have noticed the difference in the fat rolls. They might not have noticed the jumping on one leg. They might not have pointed it out to the doctor at the four month appointment. And they definitely would not have pressed the issue at the six month appointment. They would have gone along with the "expert" opinions. They would have wondered why their child was not walking or why her walk had a significant limp in it. At that point, the most likely fix is surgery to get the femoral head into the hip socket.
Thhhhhhatt's not all, folks!! There are four characteristics that are commonly associated with hip dysplasia:
1) Genetics
2) The breech position at some point during the pregnancy
3) First born child
4) Female
Again, for those of you keeping score at home, let's go through these one by one.
1) Genetics - there is no history in either of our families, could not have been foreseen. (0 for 1)
2) Kenzie was breech during our 18 week ultrasound. (1-2)
3) First born - obviously she fits this criteria. (2-3)
4) Female - um, yes. (3-4)
As a baseball numbers geek, it is easy to see that she was hitting 0.750. Those are some great numbers in favor of her hips being all jacked up. Great work doctors.
Now you can see why Sarah and I have been so upset about this situation. Instead of diagnosing the dysplasia at two weeks and being strapped up the first few months of her life, now she will be forced to be immobile during formative developmental months. She will not be crawling on schedule. She will not be walking on schedule. In a year or so, this will probably all be behind us. It is just be a small bump in an incredible life of an incredible girl. It just sucks during the present.
Thanks for all the support, all the love, and all the prayers we have received over the last few weeks.
Mike (and Sarah)
Saturday, January 15, 2011
A Sad Update
So we are very behind on our blogging but we figured this would be the best way to inform everyone of some recent developments in our lives.
Here is the update. Mackenzie has been diagnosed with hip dysplasia. This diagnosis is normally caught much, much earlier (usually during the first few weekly appointments). That is another issue. At her 4 month appointment, we pointed out changes with Mackenzie's fat rolls and also her dislike of jumping on her left leg. The doctor felt that she just favored that side. At 6 months, we pointed out again. I forced an X-ray because something was just not right. Needless to say, her left hip was dislocated.
So what does this mean?
Well in non-medical terms, her left hip is dislocated or not in the socket. It needs to placed back in the socket or she will have a whole heap of problems: different length legs, potentially not walking, walking with a limp, or early hip replacement. We do not think it hurts her at this point because babies do not have full bone formation. She does not currently have bone-on-bone rubbing.
What is next?
We met with a pediatric orthopedic surgeon on Friday, January 14th. She has decided that she would like to do an arthogram under general anesthesia. They will put her to sleep, then they will inject dye into her joint to see how far the femoral head is out of the socket. If it is not far from the socket, they will move the hip as close to the correct position as they can and then they will cast the leg in the frog position (knees up and out) for 4 weeks. This will promote the hip to heal on its own. If the femoral head is far from the socket they will do the same process, but we will go back in just 3 weeks for a checkup. If there is positive progress, they will recast at that point and continue treatment. If there is not improvement, they will potentially have to do surgery to loosen ligements and deepen the socket to get the bones in the correct place. After surgery, they would also cast her legs in the frog position. We are praying that they find out that her femoral head is in a good place and she will only be in the cast (and no surgery will be required). Either way, she will have a cast for 3 or 4 months, so our happy baby may become an irritable and cranky baby. If that happens, can you blame her? The casting is probably going to be worse on us than it will be on her. She will have a cast from her chest down to her ankles, with a hole in her crotch area. The cast will be big and her frog position will limit how much she can sit, move, and fit into car seats/high chairs/shopping carts/etc. Let's just pray that the casting will work to fix it and she will not need surgery.
The good news is that this problem is fixable. The doctor told us that once the hip is correctly in place, there is only a 5% chance that she will experience some type of residual issues from the dysplasia. We are hoping that the treatment for the next several months will allow her to have completely healthy hips.
We are trying to anticipate all the changes that may be coming as we move forward. For instance, we bought some new clothes that will fit over her cast, we are looking into buying her big girl car seats earlier than we anticipated, and we are looking to get bean bag chairs so she can sit at our house and at Grandma's. We have also tried to figure out how diaper changes, trips to restaurants, or trips to the grocery store will work. The next 3 to 4 months could be pretty rough for us. Just thought we would give you all an update. We will try to let know when things are scheduled. Please keep us in your prayers.
Sarah (and Mike)
Here is the update. Mackenzie has been diagnosed with hip dysplasia. This diagnosis is normally caught much, much earlier (usually during the first few weekly appointments). That is another issue. At her 4 month appointment, we pointed out changes with Mackenzie's fat rolls and also her dislike of jumping on her left leg. The doctor felt that she just favored that side. At 6 months, we pointed out again. I forced an X-ray because something was just not right. Needless to say, her left hip was dislocated.
So what does this mean?
Well in non-medical terms, her left hip is dislocated or not in the socket. It needs to placed back in the socket or she will have a whole heap of problems: different length legs, potentially not walking, walking with a limp, or early hip replacement. We do not think it hurts her at this point because babies do not have full bone formation. She does not currently have bone-on-bone rubbing.
What is next?
We met with a pediatric orthopedic surgeon on Friday, January 14th. She has decided that she would like to do an arthogram under general anesthesia. They will put her to sleep, then they will inject dye into her joint to see how far the femoral head is out of the socket. If it is not far from the socket, they will move the hip as close to the correct position as they can and then they will cast the leg in the frog position (knees up and out) for 4 weeks. This will promote the hip to heal on its own. If the femoral head is far from the socket they will do the same process, but we will go back in just 3 weeks for a checkup. If there is positive progress, they will recast at that point and continue treatment. If there is not improvement, they will potentially have to do surgery to loosen ligements and deepen the socket to get the bones in the correct place. After surgery, they would also cast her legs in the frog position. We are praying that they find out that her femoral head is in a good place and she will only be in the cast (and no surgery will be required). Either way, she will have a cast for 3 or 4 months, so our happy baby may become an irritable and cranky baby. If that happens, can you blame her? The casting is probably going to be worse on us than it will be on her. She will have a cast from her chest down to her ankles, with a hole in her crotch area. The cast will be big and her frog position will limit how much she can sit, move, and fit into car seats/high chairs/shopping carts/etc. Let's just pray that the casting will work to fix it and she will not need surgery.
The good news is that this problem is fixable. The doctor told us that once the hip is correctly in place, there is only a 5% chance that she will experience some type of residual issues from the dysplasia. We are hoping that the treatment for the next several months will allow her to have completely healthy hips.
We are trying to anticipate all the changes that may be coming as we move forward. For instance, we bought some new clothes that will fit over her cast, we are looking into buying her big girl car seats earlier than we anticipated, and we are looking to get bean bag chairs so she can sit at our house and at Grandma's. We have also tried to figure out how diaper changes, trips to restaurants, or trips to the grocery store will work. The next 3 to 4 months could be pretty rough for us. Just thought we would give you all an update. We will try to let know when things are scheduled. Please keep us in your prayers.
Sarah (and Mike)
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