Monday, October 24, 2011

The Cast Removal

We eagerly made our way back up to Dallas on October 17th to get Cameron's cast taken off. We were SO excited and we are pretty sure that she knew what was up too. We had been telling her for a week, "They are gonna take your cast off soon!" And she would smile and touch her cast and say, "Off!" We didn't have to wait at all. As soon as we arrived they brought us back to a secluded room (most likely tucked away so that others can't hear the children crying and screaming) where they would remove her cast. A very nice man came in and sort of told us what to expect. She wasn't going to be happy and we just needed to turn her away from the saw and keep a hand towel between her and it so that no debris would fly into her eyes. I'm actually not sure what they call the tool they use. The word saw sounds a lot scarier than this thing really is. Even if it were to touch your skin, it would't cut. It is the sound it makes that is so terrifying to children. As soon as we laid her down on the table and he turned it on, she came unglued. It was hard to watch the terror in her eyes, I had never seen her that upset before. But it was fast and within 2 minutes we had our baby back! The man left us alone for a bit to clean her up, put a real diaper on her, and of course to have a moment of crying/leg squeezing! We then headed over to radiology for her CT. Cam wasn't too upset anymore and she just started rubbing herself where the cast had been and saying "legs!" So sweet! The CT results once again looked great. There is no visible growth of the femur just yet, but it is still soon.  Dr. Sucato said that he wouldn't need to see her again for 6 months and that within the next 6 months to year we will just want to: 1) Make sure the hip stays in place and 2) begin to see bone growing and replacing cartilage within the femur. Also, between then and about the age of 4 or 5, we need to see her hip socket come down and enclose the femur better so that both hip sockets are symmetrical.
We will be returning sooner than 6 months, however, because they want to check out baby William's hips 6 weeks postpartum and they will go ahead and to a follow up CT on Cameron at that time. The chances of him having a similar condition are pretty slim considering he is not the first born and  a male, but it will make us feel tons better!  We have been so blessed to be able to receive care for Cameron at Scottish Rite. They continue to impress us with each visit.
I can't believe the journey is over (let's hope, forever!) When Cam was first diagnosed back in May, it seemed like our world was just coming to an end. We were both so overcome with grief and well, just heartbroken for our little girl to have to go through something that sounded so horrific. Looking back, it doesn't seem that bad at all. Traction was the toughest part and the spica cast was definitely trying, but time just flew by. I thank God every day for Cameron's happy demeanor and continual patience with it all. She was the reason it never seemed so bad. She never once complained and we all just made the best of each day. My heart goes out to any parent that gets the DDH diagnosis, it is so scary. But I do hope that some make it to this blog and can take comfort in knowing that it is not the end of the world and it is totally do-able! Cameron's story, thus far, is a success with DDH. I don't want to count my eggs before they've hatched. you hear stories all the time of kids that have to do it all over again or worse and I know there is no promise that she won't have to be one of those kids. BUT for now, I am taking a BIG sigh of relief and just happy to have her sweet legs back in my arms!
It has been 1 week today since her cast removal and she is crawling and trying to stand up on her own already! She is happier than ever.

Cast Change & 2nd CT

It has been a while since I last updated. Cameron's cast change was on September 2nd and it went really well. The CT results looked very good, so we were surprised with the awesome news that she would only need to spend 6 more weeks in a cast! And this cast only went to the knee on her right leg, so we got part of sweet, chubby leg to squeeze during that 6 weeks. It was a long day at the hospital and she was not happy at all when waking up from anesthesia, but we left happy and high on good news.

Sunday, August 14, 2011

Post-Op CT results

We ended up going back for her follow up CT after 3 weeks instead of 2 and her hip looks great! It's right where it should be. We met with Dr. Sucato whom you could tell was very happy for her and glad that the closed reduction was a success. He showed us the CT images and we could not believe it was the same pair of hips from 2 months earlier! So now we just pray that it stays put and that the developing bone in her left hip starts replacing that cartilage and catches up with her right hip socket. I have no doubt that if her hip looks this good after 3 weeks, that it will still look good in another 15. Could not be happier. She will most likely be in her spica cast up until the last of November or start of December (right around the same time I am due with her little brother!) Hmmm...I just might have to plan this birth. Not happy about that, but it will work out. Just want to have two healthy, happy kiddos when December rolls around. =)

Cameron's Surgery Date

"Our fears are more numerous than our dangers, and we suffer more in our imagination than in reality."
- Seneca     

      The time had come to head back up to Dallas for Cam's surgery. We went up on July 17th and stayed the night so that we could be at the hospital the next day in time to start the admission process. Overall, her Dad and I were pretty freaked out and there were times leading up to her surgery that we couldn't even talk about it. It was so hard to deal with the anticipation of her being taken away from us, being placed under anesthesia, and going through surgery. We had so many questions and only time would tell. There were a whole lot of "possibilities" involved in her surgery and it could go a lot of different directions. We had faith that she was in amazing hands (the Dr. and God) and maybe weren't as scared of the procedure as we were of her waking up in the cast. How in the world would she react? BUT at the same time we were also excited to get the wraps off of her and squeeze those chubby legs again!!! The admission process was very long and made for an exhausting day, but the hospital was super organized and made the whole experience more pleasant than expected. We were done by 4 that afternoon and got to check out and leave with Cameron for a little while before returning to stay the night. We went back to the hotel (the Doubletree up the street has a special TSRH rate and they are awesome!), ordered room service and got to give Cameron the first real bath she had had in a month and the last one we would be able to give her for many months. There was lots of butt and leg squeezing going on. I think she played in the tub for around 45 min. =) She was always our little water baby. After the baby squeezing session, we reluctantly drove back to the hospital and checked back in. I stayed with her that night and we actually both got some descent sleep.
      The morning of July 19th, she was not able to have anything except clear liquids and jello and could only have these up until 9am (a little later since her surgery wasn't until 12:00).  She didn't complain much about not receiving her normal breakfast foods, but she did get pretty hungry before 12 finally rolled around.  The hours waiting before they came to get her were not fun, but she didn't seem to mind, She had us and her MiMi and GiGi there with her. When they were ready for her, we were escorted down to the surgery floor and able to hold her the whole time (they don't actually come take your baby, thank goodness!)  We had a seat in the holding room where they made her feel comfy and asked us lots of questions. They gave her some "goofy juice" to drink so that she would relax before they took her back and administered an IV or put her under all the way. Not sure what his stuff actually was, but she was HAPPY! It was hilarious. She was just all smiles and roaring like a lion (her favorite animal). It really helped to lighten the mood for us too. She did not mind at all when two strange women dressed completely in blue came and grabbed her. The main nurse and anesthesiologist asked me a few more questions and made it a point to tell me that they were all prepped and ready to perform an open reduction surgery. They then gave us a pager like you get at a restaurant. When it beeps you can either come back to the main surgery desk for an update or pick up a phone around the hospital and call back for details. Our baby had been replaced by a restaurant buzzer. We met up with our parents and went to the cafeteria to try and eat some lunch. After about an hour and a half they buzzed for the first time and we ran back down to the desk. They handed us the phone and we were informed that things were going very well and that it looked as though the closed reduction may be a success! We couldn't believe our ears! They would still have to do X-Rays, apply the cast, and then a CT scan to make sure the hip was in fact in a good spot. But, we did not expect it to be that smooth, words cannot describe hood ecstatic we all felt. We made our way back to the waiting room and about 30 minutes later, were buzzed again. This time, they just wanted to know what color cast Cameron would like! Hot pin k of course!!! =) Back to the waiting room.  So happy. When the buzzed the art time they wanted us to come down and help them escort her to have the CT done because anesthesia was wearing off and our little girl was not a happy camper! This was the best and the hardest part of it all. Knowing that her hip was back where it belonged without invasive surgery was a miracle, but she did not understand what in the world was going on. She screamed and cried all the way to, from, and during the CT and back to her room where we waited on the results. We comforted her and played some of her favorite songs until she quieted down and drifted back off to sleep. Once she was calm, the time came to check out her cast. We had no idea what position she would be in, but were very pleased to pull back the sheet and find her in a simple seated position with both legs bent. The cast, at least to me, was pretty daunting. It seemed so huge! It starts at her chest, right under her breasts, and goes down to her ankles on both legs. Where in the world is my baby inside of all of this hot pink fiber glass???
      She slept for a good while and then when she finally did open her eyes, we were all there to smile at her and she smiled back. The Jason Mraz song she likes so much just happened to be playing in the background and she started bobbing up and down DANCING in her cast! It made us all burst out laughing! This reassured us right away that nothing had happened to our daughter, just to her hip. After a little while she got hungry and we ordered her room service and of course, ice cream! (TSRH has amazing food for kids and lots of vegetarian options which was great.) That night her daddy stayed with her and 4 1/2 month pregnant mommy got to get a break. Plus, I was still very unsure of how to even hold her or pick her up. I was so thankful that Justin was there to help the nurses that night. The next day, she was doing absolutely wonderfully, although a little sleep deprived from late night nurse's visits. The doctors came to assess her and said she looked great. They wanted to see her back in 2 weeks for another CT to make sure her hip was still in place. Then we were out of there by 1:00 that afternoon! It was not the hospital visit we had anticipated at all. We just knew she was going to have to have the open procedure and that we would be there up to 3 days after, but nope... we were already headed back home to CC! It was an absolute blessing. We cannot say thank you enough to Dr. Sucato and his team at Scottish Rite!

Monday, August 8, 2011

Cameron's Month in Bryant's Traction

"Happiness is a form of courage." -Holbrook Jackson

      We went back up to Dallas the very next week after her initial visit to get her traction device fitted and ready to go back to Corpus Christi with us. Truthfully, because of her age, I had my doubts as to wether or not Cam would put up with it at all. Neither one of us were sure just what to expect from our usually mild mannered little girl. When the time came, she didn't' mind getting her legs wrapped up at all. But, the traction test drive around the hospital in her little red wagon did not go so well. We wheeled her around the hospital with her feet straight up in the air and her screaming like crazy. She was not happy at all. At that point we just wanted to scoop her up and run away, but we knew she was most likely just upset because she was awkward and had a bunch of people staring at her. So, we loaded her and the traction device into the car and drove home that same day. She was to stay in traction at all times except to eat or drink. I remember feeling like saying, "Yeah, right! This 16 month old that is used to playing outside and going through kitchen drawers is not about to give it all up." But much to our surprise, she never once even made a fuss! Sure, her world changed a lot (and ours did too), but her easy going and happy nature didn't waiver at all. We spent more time than we would have liked just watching movies, reading books, and listening to music. The traction harnesses didn't stop her much. She would turn over and crawl as far as she could to reach toys, she would sway her hips and dance to music, and a couple of times we even found her sitting up and playing (which sounds horrible, but they said the more movement the better to stretch everything out). There were hard times, but unfortunately we knew the hardest was still yet to come.

A few tips for getting through time in traction with a toddler:

1.  Your child's toy selection changes a lot. Large or heavy toys are no good unless they can flip over and play with them. Everything ends up being held over the face, so anything heavy or sharp can and will be dropped and may hurt them. Choose toys that will keep their hands and minds occupied as long as possible. Cam really liked sticker books. She would decorate everything including herself, us, and her traction machine.  We were also fortunate enough to be able to get an Apple iPad (which sounded bad to me at first since I was never big on her even watching TV).  The iPad was perfect for her. We got the otter box cover so she could't do any damage and then hung it from the PVC on her traction. It was crazy how fast she learned how to play (carefully selected) music videos and movies and turn pages through interactive children books. There are a lot of apps for toddlers. This turned out to be a great idea and a lifesaver.

2.  One on one play.  I have heard some parents say they worry about spoiling their baby, I think that is silly. At this point, if your baby that used to run around and play has to be kept still lying down 24/7, just keeping her happy is key. Their happiness and comfort is most important. So, unless she was busy playing or watching a movie, there was someone with her almost all the time to read with her or play games, etc. I know that this is what enabled her to spend so much time in traction. She needed support to not feel left alone and tied up. (After all, it is a little bit like your baby is hooked up to a medieval torture device.)

3.  When your child has a bad moment and just isn't happy, by all means, take them out of traction and get it off of their mind!!!!!! Cam has always thrived (as all kids do) on a schedule she can count on. Our schedule included a couple of times during the day to get up for 15 min. or so to go outside, have company, or go for a car ride.  I know they say to stay in traction AT ALL TIMES except to eat, but we found that by giving her little breaks, she didn't protest and ultimately probably spent more time in traction.

4.  Don't give up on your child sleeping in it! I know it's tough, but if they can sleep through the night in it, that's a huge chunk of time that their hip(s) are benefiting from. What worked for us was getting a twin bed in the nursery. I laid down with Cameron every night until she wound down and drifted off to sleep. Then I just scooped her up and into her crib, hooked her up, and was able to leave the room and get some things done for myself.

5.  Spend the money and get a video monitor.  We were able to keep an eye on Cameron while she slept to make sure she was in a good position and that her legs weren't tangled. (She was constantly getting tangled and had to be undone day and night.) We actually found that she still preferred to sleep on her tummy, so she would twist her harnesses once in order to roll over. This was fine because it didn't hurt her at all or interfere with how the weights were pulling.

6.  When time in traction is over and you go back in, have the nurses remove all of the wrapping from your child's legs. We were sent back to our hotel that night with the stuff to remove it, but it was not a pleasant experience. It pulled her skin and hair really bad and should have been done quickly by the nurses before we left. No big deal though, we got it off and were able to bather her that night.

Hope this is helpful. I will add more as I think of others.

Cameron's Diagnosis

"Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope."  

- Maya Angelou

      Being our first child, we thought nothing at all of Cameron taking her very first step at 12 months and then not progressing to really walk until late in her 14th month. It didn't really become apparent that there may be an issue until at 15 months old, we realized she was still not making any progress with walking and started to have a pronounced gait to her walk. She was always trying to tip toe with her left foot. So, one day we sat her down on her changing table, removed her diaper, and came to the horrifying realization that her right leg was almost an inch longer than her left. We made an appointment with her pediatrician immediately and then the google searches began. (which is sometimes just not a good idea, but totally irresistible) We had no idea what the problem was that she was facing and so set in the feeling we would get so used to over the next few months, the fear of the unknown.
      Cam had been perfectly healthy up to this point. Not even haven taken antibiotics or tylenol more than twice. For the first time as parents, we felt a total lack of control. We couldn't make this better. It was the most defeating feeling I'd ever experienced and I must have already blocked it out because it is hard to even recall now in order to type this blog. We now know that she is going to be just fine.
So, our journey started out with a trip to a local pediatrician here in Corpus Christi. We waited over an hour to be told that "Yes, there is in fact a leg length discrepancy" and she was sent off for X-rays, which we had done right away. The results were phoned back to us later that day. The pediatrician in a solemn tone informed me that it wasn't good news.  Her left hip was extremely out of place and the socket was very shallow. She would need to see a specialist right away.  There is nothing you can do with news like that except, well, swallow it bravely and take the next step. We then waited over two weeks to see the specialist.
      We took her to an orthopedic surgeon here in CC whom had examined her X-rays. The surgeon sat us down and basically told us that she would need a very invasive surgery. He would need to cut part of her bone, move the hip back in place, and put Cameron in a body cast. I don't remember much more of the details of the surgery he was ready to perform because my husband and I were in absolute shock. He compared this operation to being "a little like going overseas in combat" and said that the operation was a little like a "mine field" because there were a few possible complications. He mentioned that numerous surgeries may need to be done, the words "avascular necrosis" came up a couple times, and that the end result, if surgeries weren't successful would be just to fuse her femur to her hip bone. All of this was explained to us in around 15 minutes and we were just sitting there with tears in our eyes. This was a little harder to swallow. Thank goodness for family being there with us and giving us much needed encouragement (Thanks Megan!)
      The decision was made right away that we needed a second opinion. My mom had already reminded us about the Texas Scottish Rite Hospital in Dallas being THE place for children with orthopedic problems to go. So, we quickly applied and the waiting game started. Meanwhile, of course, Cam is still the happiest baby on the planet. Hobbling all over the place and getting into everything... just having the time of her life. =) We were very fortunate in that we didn't have to wait long. We were accepted and got an appointment with a highly trained and experienced orthopedic surgeon. That is when our adventures to Dallas began.
Our first appointment at TSRH was on June 15, 2011. Of course we were worried, but we had heard so many good, inspiring stories about babies/toddlers with developmental dysplasia of the hip (DDH) and about TSRH, that we were really just optimistic and hoping for the best. (Cam hadn't officially been diagnosed with DDH by the first ortho surgeon ((who didn't even give us a real diagnosis)), but we had figured out that's what it was.
      We were impressed with TSRH right away. They were super organized and timely, not to mention how friendly everyone was. We knew we were in the right place when instead of seeing a bunch of kiddos with broken arms and legs, there were children cruising around with all kinds of contraptions on their feet, head, legs, etc. These doctors here were the specialists, not the broken bone doctor we had gone to see in CC. We didn't wait long and Cameron was immediately taken to get new, more clear X-rays. We then met the doctor and nursing team that would be taking care of Cam throughout her journey. They were all amazing from the beginning. Overall all, they spent almost 2 hours with us and explained every detail of their goals for Cameron's surgery and recovery. The doctor explained that she did have DDH and that she may or may not have been born with her hip out of place. It most likely was just always loose and worked its way out over time, explaining why no doctors ever caught the problem. The doctor recommended that Cameron be placed in what they call Bryant's traction for 1 month prior to her surgery in order to loosen up all of that connective tissue, etc. that may get in the way during surgery or give resistance to bones trying to settle in new places afterward. They explained that the medical field, as well as their hospital's surgeons are all divided on the issue. Some think that it does nothing at all, while others say that it helps out a ton and wouldn't do it any other way. In order to help clear up the issue, the hospital decided to conduct some research on their DDH patients, following them throughout their entire treatment and afterward to see if those who had participated in the traction actually benefited more so than the others. That being said, they convinced us to put Cam into traction and we said we would participate in their research study. It couldn't hurt and it would be worse to wonder later on if the traction may have helped out in some way. So we went for it! After her month in traction, Cameron would go in for surgery. The doctor explained that there was a chance that she may get away with having only a closed reduction surgery where they physically force the hip back into place without opening her up, but that there was a better chance that because of her age (howling her hip had been out) and severity of the displacement, that they would need to go in and do some "rearranging" to ensure her hip would rest well in socket. Either way, we were just ready to get it done and start the healing process. Her doctor and his team were super optimistic and acted like these procedures were no big deal, which made us feel great.
      The moral of this story is, don't except a frightening diagnosis when anything at all about it doesn't add up. Trust your common sense and get a second opinion for your child. Do the research and figure out where the best care is located and if at all possible, make it available to them. It has been tough driving back and forth to Dallas and the business that her dad and I are starting up has suffered, but there is nothing at all more important than her being able to walk normally someday! We would have sacrificed whatever we had to in order for her to get the best outcome and we rest easy at night knowing that she is in good hands at TSRH.