At about 4 months old Alayna's feet looked so much better, except they were kind of turning outwards. I remember one day walking into the NICU and saying she looks like a little ballerina. Her hips had turned outwards and her feet were all the way turned out, like a ballerina standing in the turnout position. Her physical therapist also noticed that the same day. So of course I started freaking out and asking the doctors about it. They had an ultrasound done of her hips and they diagnosed her with bilateral dysplasia, meaning both of her hips were out of socket. We had a consultation with an orthopedic surgeon. He mainly just stated to bring her back when she was released and we would discuss our options of correcting this condition. He stated that this was most likely from her not moving in the womb and she wasn't able to form her hips into socket also the same reason her feet were considered Rocker Bottom or Vertical Talus. Alayna's hips have always been very, very stiff and she has never been able to get her feet to her mouth. A milestone that many kids hit by a certain age. She always tried but just couldn't do it. I always wondered if it was from her muscle disorder or her hip dysplasia, it was confirmed that it was her hip dysplasia. Not all kids are affected like Alayna was.
Fast forward to after Alayna was discharged from the NICU...St Louis orthopedics would not see Alayna because of insurance reasons. We were referred to an ortho here in Springfield. Our first appointment they did x-rays on Alayna's hips and feet. Again they confirmed the hip dysplasia and vertical talus. This ortho told us that Alayna did not have any sockets, they never formed. That meaning she would require a very invasive surgery. They doctor wanted to do more research on her myopathy before deciding if she was going to do the surgery or not. Alayna was casted from her thigh to her feet, her feet being covered. There was a good chance this would fix her feet. It would take about 5 weeks, cast changes every week, and possibly surgery if the casting didn't work. Vertical talus was also described to us as being the exact opposite of Club Foot. They were pretty much fixed the same way as well. Alayna's right foot was only casted for 3 weeks and was corrected, great news! Her left foot went the whole 5 weeks and we were told it was better but not corrected. She would need surgery because if we left it as is, it would cause her pain. By this time her ortho explained to us that she would not do surgery. Alayna could still lead a normal life. As the doctor explained her reasons, I became very frustrated and honestly wanted to smack her in the face! She stated that there was very little chance Alayna would walk so why do it? Really? I want to give her every chance possible to succeed and that includes fixing her hips. She also said that there was a 99% chance that Alayna would die during surgery because it was so invasive and she was not even close to being healthy. Seriously, she was on oxygen for her lung disease not her myopathy. This doctor also wanted to clip her heel cord because it was tight from being in the cast, ummmmm no thank you. She was not confident in her own work so why would I trust her with such a simple procedure as clipping her heel cord. We left that office and never looked back.
I contacted St Louis and let them know the situation and they were baffled. Even her neurologist said she was good enough for surgery. So then we started the journey a finding an orthopedic doctor in St Louis. Alayna is on Medicaid and the orthopedic office at St Louis Children's does not except Medicaid. That is a total shock because every other department does. I do not like being state assisted insurance but without it we wouldn't be able to live. Alayna is truly a million dollar baby. Her NICU bills alone were over a million dollars. That didn't include all the supplies we needed at home, medications, and all her doctor appointments after being discharged from the NICU.
Thank goodness we had Donna! She is our Newborn Clinic Nurse. She is truly an amazing woman. After fighting with Children's for oh about 3 months she finally got us an appointment! Well it was cancelled 3 days before. I was very frustrated but really what could I do? She then got us another appointment about 2 months later, again cancelled. So about a month later she was told that there was no way they would see Alayna. She called me and told me the bad news but said we can schedule you an appointment with Cardinal Glennon with Dr Puryear. I went ahead and said lets get it done, there was nothing else I could do. So the appointment was scheduled for the next week. As soon as I hung up with Donna, the ortho department at Children's called and said that they would see Alayna. Oh come on! I told them we were told by the Director she would not be seen. The receptionist said she knew about that but all we needed was a referral from her pediatrician and they would see her, and she was sorry about all the confusion. We had gone through 6 months of back and forth. That appointment was scheduled for 4 weeks later. I called Donna back and told her what was going on. She offered to cancel the appointment at Cardinal Glennon for us and I told her to lets just keep it and see what they say in case our appointment gets cancelled again.
I was very nervous for our appointment. I had become so comfortable with Children's that I really didn't want another hospital doing her surgery. They didn't know Alayna. Plus our first ortho had me scared out of my mind. Dr Puryear was AMAZING!! He came in and picked up Alayna and started playing with her. He said that she did have sockets so that was a plus. What the heck was that other doctor talking about????? He said that he hip dysplasia is a neuromuscular hip dysplasia so we would try a closed reduction, usually there is a very high success rate with kids with myopathys. She would need to be in a cast from her chest to her feet for 12 weeks. A closed reduction does not involve any cutting. The procedure consists of doing an x-ray and guiding her hips back into socket. We were told that if he couldn't get them in he would stop surgery and go on to the more invasive surgery, osteotomy. He didn't want to do an open reduction, involves cutting, and then have the chance of doing an osteotomy in the future. He also stated that her heel cord did not need clipped and her left foot looked good, it would not cause her any pain. So the surgery was scheduled!
The day of surgery I was a nervous wreck. Alayna had to go back on the vent for this. My fear was that she would not come back off with her lung disease and pulmonary hypertension. Even though she was off oxygen she still had these issues. Her newborn doctor with Childrens gave us a "stress" dose of steroids to help with her coming back off the vent. We arrived at the hospital at 6:45 am and started getting everything going! About 30 minutes after Alayna was wheeled back into the OR room the nurse called and said Alayna was sleeping and doing great and the procedure was getting ready to start. I swear every time that phone rang in the waiting room I jumped! 25 minutes after we got that call Dr Puryear came into the waiting room. He told us that he could not get her hips into socket so he went ahead and stopped the procedure. Dr Puryear also said that he wanted to wait until she was 2 and we would do the osteotomy. Alayna was off the vent before she left the OR room!!! All that worry for nothing! The recovery nurse said she was given a lot of sedation and doing very well, she doesn't see kids do so well with as much sedation as she had. When Alayna was in the PICU we were told they had to keep switching her sedation because it wasn't working for a long amount of time. The doctor said she must have the red head genes because so many red heads are that way with sedation. We had to stay 1 night in he hospital because Alayna has sleep apnea and sedation makes it a lot worse. We were not happy but what is best for Alayna is what we will do! We were discharged the next morning at 7 am! Those doctors do their rounds early! I have never been discharged so fast!
We went and saw Dr Puryear a month later for a follow up. I figured it was just to pretty much tell us he will see us back when Alayna is 2! Well the resident came in and started telling us about the surgery and to call and schedule in a few days and surgery will be in a few weeks. I was very confused. So the doctor came in and said I think she is healthy enough, we should do it now! I came home from that appointment very excited and very scared at the same time. Our first orthos words kept ringing in my head, she is going to die. We scheduled surgery and it was 6 weeks later. I scheduled it later because we were supposed to take another family vacation to Florida but that changed because my car needed fixed.
This time we didn't have to be at the hospital until 7:45 am. The whole drive there I was very nauseous and trying to keep my cool. I didn't want Andrew to see me freaking out. We talked with the anesthesiologist and she was wonderful and she helped calm my nerves! I made sure I told Dr Puryear to take care of my girl. Little Gracie (I call her Gracie a lot!) was wheeled off and we were told to go eat because they wouldn't be starting for at least an hour. We got the call that she was out and surgery was starting. Surgery was to last 5 hours. Dr Puryear also stated that he would do the first hip and see how she was doing if she wasn't doing well then he would stop and that leg would be done at another time, if she was doing well he would continue to the next leg. This surgery would consist of shaving her femur and pelvic bones plus other cutting of tendons and muscles. There was a great risk that Alayna would need a blood transfusion because of the bone shaving.
Not even an hour into surgery and we get the call, everything is going great and in about 30 minutes they would be starting the 2nd leg. I was so grateful, everything was going great! After everything we were being told, it was going great! Surgery only last 4 hours. The doctor came out and told us that he femur bone did not need to be shaved and her hips went in perfectly!! Alayna woke up from recovery very out of it, she also came off the vent once she hit the recovery room!! We were told that we would be there 2-3 days and not leave any sooner, so we were expecting a very uncomfortable, long stay. Alayna did not sleep well at all, we gave her morphine and I will never give her that again. Her oxygen saturations would go down to the mid 80's and that is not like Alayna. Now when she was on oxygen that was completely normal. She was also on valium as well. She slept for no more than 2 hours at a time. The next day the Dr Puryear's nurse came in and said she was doing great, better than most kids do after this surgery. So we were given the chance to go home early and we took it!
The first few days were very tough. Alayna was so doped up on valium and tylenol with codeine. She even needed oxygen one night because she was so out of it, thank goodness we had the supplies! So the valium stopped that day and the codeine went to half her dose, every 6 hours instead of every 4. This spica cast has taken a lot to get used to. Alayna absolutely hates it. She had her follow up appointment 3 weeks later. Well about 3 days before her appointment Alayna had a little issue with diarrhea and it went all through her cast, oh it was so gross. So they decided to do a cast change that Thursday. They do cast changes in the OR room with sedation. So here we go again! We were there at 5:45 am and were gone by 10 am! This sedation did not require the ventilator, thank goodness, she was wide awake when she was wheeled into the recovery room! She gave me the biggest hug in the world!
Alayna is finally adjusting to life in her casts. She still tries to sit up all the time and gets very mad when she can't do it. She can roll from her belly to her back and turn in circles in her cast. When the cast change was done we were told her hips look great and that she would not need the extra 6 weeks in her casts. Her scheduled date to have her casts removed is December 22nd, such a wonderful Christmas present!!! Cast removal also requires sedation, so one more trip with the sedation and hopefully we are done! I am very thankful to God for Alayna and everything he has done for her. Our first ortho made this surgery look like the end and she made it through! I would love to take Alayna up to her office and throw it in her face! But I am a bigger person and will just dream about it! I am also very thankful for Dr Puryear, he is a wonderful doctor!
I hoping this will open the doors for Alayna! She was walking in her walker before. She could not stand unassisted because she was very unstable in her hips and I think this will help her tremendously! I also think it will help with her crawling. I am going to try to update this blog with more recent events and past events. I don't have much time on my hands anymore!
