Cast Day #1

So many emotions going through me right now. I don't really know what to think about this new "thing" we brought home with us. Today definitely took an emotional toll on me. But he did absolutely amazing!

Of course, he NEVER wakes up in the middle of the night and last night was that one night that he just had to wake up when he couldn't eat after 3:00AM, now I know that I will just have to feed him in the middle of the night when this happens from now on.

We had to be at the hospital at 6:00AM so we were up and going at 5:00AM so we are exhausted now but we are still going. Nothing really hit me until the nurse came and took him away to take him back that was around 7:30AM, and I couldn't hold the tears back any longer. It was so upsetting seeing him go to the back without me.

We went back down to the 2nd floor and went into the waiting room where my mom,dad and grandma were waiting on us to report how he was. You would have thought we were chopping his leg off because he was so hungry and I hated not being able to feed him.

This is right before they took Camden back. They put these little shirts on him to protect his skin from the hard plaster that they will place around him.

 Mommy and Camden right before the nurse came

 

 

 

 We were starving so we went to grab some breakfast in the cafeteria which wasn't bad for hospital food. Around 8:30 right after we got finished they called us up so that Dr. Pete could meet with us and talk to us about how everything went. He said Camden is great! That he was fine and they were trying to wake him up to drink some Pedialyte. We got put into a room so that he could eat some food, get his cast cut around the edges and dry his cast completely since it is plaster. I couldn't wait to see him so I was pacing the door, and heard him down the hall, snubbing. He was not a happy camper since he hadn't eaten and all these strange women that he didn't know were carrying him around.

We got inside the room and started the drying process of the plaster. This is like a HUGE blow dryer to stick underneath a blanket so that the plaster can completely dry up.

The one thing that I didn't want to happen, happened. He threw up and I HATE seeing my baby throw up. But it was all clear so he didn't throw up any formula that I had given him, which was a plus. But he did great other than that, just looked around at everyone and around the room to check it out.

Mommy holding Camden for the drying process.

After the plaster was dry a new nurse came in to trim the edges off and complete the cast.

He was pretty good throughout this. He looked around and stared at her as she cut and adjusted his cast. Then we were able to decorate it with whatever color we wanted. Well we had some camo flex tape since daddy is a hunter so as of right now he has a camo cast which is too stinking adorable. They had also asked if we had picked out a build-a-bear for Camden, although Camden doesn't really know the difference right now we went to pick his bear out with a cute little football outfit, which we will be able to change every single time we go back!

Trimming up his cast.

 His new little camo cast!

 

After all these things were done we were finally able to get ready to go home! He had kept down all 6 ounces that he ate, and he was back to his smiley self. He would get a little cranky at times but he was so sleepy from all the events that went on today, we got 5 minutes down the road and he was out, and slept all 2 hours we were on the road and this mommy even got a little nap in too! 

 

He has been absolutely awesome since we walked in the door at home and I can only pray that every time we go back it gets better and better. All of the nurses that helped us, and my Camden man were AMAZING and of course as Jennifer(Jackson's mom) would say, Dr. Stasikelis is IMPECCABLE! No words can truly describe that man.

I felt like I had been going back and forth for 6 years, I felt like family there and that's how it should be. They are all so welcoming, comforting and warming. I would definitely recommend them to anyone and everyone that needed the help they provide.

 

 

 

 



Pre-Op #1

Today brought A LOT. Most of it, I expected so nothing came as a surprise to me.

Camden is getting to that age where he has to be into everything and he has to start discovering new things so he was a little wild today.

We left our house about 10:00AM and arrived at Shriner's Greenville, South Carolina about 12:15PM. The closer and closer we got the more and more my stomach started to get knots. There is absolutely NOTHING that could have prepared me for this day or tomorrow. After we arrived at Shriner's, got checked in, and immediately got Camden weighed and measured. We were put in a small check-up room where we would wait on all of the involved doctor's for tomorrow would visit us.

 

Dr. Pete's nurse came in and of course they always have 100 questions for you so we spent some time answering those. She also told us that Camden's procedure would be at 6:00AM and that was the time to be at the hospital to get checked in.

 After that she sent the anesthesiologist in to ask more questions and walk us through what would go on during the morning. They will take him back to the operating room without us, he would get a mask with gas to help him go to sleep(so not shots that's a plus). Although he will get an IV for other things(but that's while he's asleep). He should be back there for about an hour, or less then will start waking up and we will be able to go back and see him then.

After Camden has his cast on we will be taken back to a cast drying room where we will dry the plaster so that then we can decorate it with tape or whatever else we have.

We also had a visit from Dr. Pete who talked to us about the steps as to what he will be doing tomorrow and how he will do everything, he makes it sound so simple because he is the only doctor in the NATION to do casting and make the spine completely straight again. He told us that it was probably a good thing that we weren't in the operating room when he was doing this because we would probably pass out. Even though there is NO INVASIVE surgery involved and it's all outside the body he still has to use the body by pushing, and tugging so it would be a hard process to watch, he really had nothing more to say except to answer our questions that we had for him, which weren't many.

 

After the pre-op today I have taken advantage of every moment I had to hold, hug and squeeze my Camden. Surprisingly today there were no tears shed, although tonight when I was feeding him before he went to bed I just stared at him and balled. Knowing that will be his last real bath for a while and that it's a sponge bath from now until who knows when, that it will be the last time I can squeeze him tight for a while, or knowing that he is so comfortable now without his cast. It breaks my heart to so many pieces I can't even think about it.

When we were released from Shriner's we did a little shopping for Camden since it's 80 degrees outside and he needs some bigger clothes to cover his cast too, and just a little for my husband and I. We ate at this AMAZING restaurant in downtown then came back to the Ronald McDonald house where we will stay for the night.

 

Tonight is so bittersweet with my baby, he is sleeping so soundly right now and I can only hope that tomorrow night after he get his cast that he will be just as comfortable and sleep just as soundly. I need to prepare myself for the fact that a diaper change will be just a little harder after tomorrow, and cleaning up spit up or throw up is going to be a little more difficult, that rolling over will be harder, or that crawling is going to take a lot more work than before. The nurses keep telling me that they are SO surprised at how comfortable children get in their cast, so quickly. I can only hope and pray that Camden will be that child.

 

Tomorrow will be a new day and it will be our lives for the next 2 years, every 6 weeks. My entire life will revolve around Camden, he is the most important thing that I need to worry about right now and for the rest of my life, but I wouldn't trade it for the world and never will.  Although I know he will have to work a little harder for things. I know that I will too. Emotionally and physically. I understand that this will wear me out until I can get used to it and that it's going to bother me more than it will him but I have to live my everyday like that and I'm just going to have to get used to that.

Many many prayers would be appreciated tomorrow for Camden's procedure and his strength, for mine and my husband's strength to keep accepting these things, and for our families strength through the next year.

 



Too Quick

Wow! What do I say? This week has snuck up on us fast and I do not like it at all. My emotions are taking a toll this week. I have so many mixed emotions. Excited, scared, happy, sad, EVERYTHING! I don't know what to do with myself. I have really enjoyed these past few weeks being able to squeeze my little man, and hold and cuddle with him because I know once this cast is on this is going to be very difficult to do.

My mind is going 100 miles a minute. The things I need to do to prepare myself for this and the things I need to prepare around the house when we get back from our first trip up to Shriner's and back. I pray that he will get used to this thing fast and it won't be as difficult as I am planning on it being. I am not prepared mentally or physically for the things to come on Thursday. Wednesday is the pre-op and I of course will update you guys right after that and also Thursday as the day goes on.

I have joined the Infantile Scoliosis Group and get e-mails everyday from mothers who are experiencing this same thing and have talked to Amanda Medlin who is another mom going through this. Her son Logan, just got put in his last cast and I could just feel the excitement for her through the e-mail that she sent stating the doctor just told her that this WILL be the last cast EVER. And knowing that one day I will hear the same words and it will fly by faster than I think makes me ecstatic!!!

This is a lot harder than others think it is. Knowing that your baby has to be put to sleep every 6 weeks to be put in his little cast breaks my heart but I know that this is a good thing. For example, Dr. Pete's assistant told us they had a boy come in the week before we did who was born with Infantile Scoliosis and never did anything about it. He was 15 years old and his degree was at 110, he wasn't able to walk up a set of stairs and one lung never developed so he would never be able to play any type of sport which broke my heart to pieces. Knowing that if we hadn't have caught this when we did Camden couldn't have played a sport, or ran around on the playground but now we are getting the help we need and he will be able to do all of those things even with his cast on. Send up your prayers this week for Camden, my husband and I as we take on the first cast! Also, prayers for our families that we can all stay strong for Camden through this!

I will update you guys again on Wednesday!

Next Visit

On March 6th we returned back to Shriner's so that they could take another x-ray of Camden's back and we could talk to Dr. Stasikelis about the MRI results. Everything seems to go so smoothly at Shriner's it's never busy and there truly aren't many people there so it's very calm. We got back to take the x-ray, I had warned my husband before we got back there that Camden did NOT like the last x-ray so this would probably go the same way. Little did I know that it didn't. All we really had to do was hold his legs still for about 10 seconds to snap the photo and we were out of there. I was shocked and VERY happy about this!

We sat down and waited in the waiting room for the nurse to call our names, it was very quick because like I said before there really aren't many people there.

We got back to the room, and I felt like we waited ALL day for him to come in. He finally came in and greeted us, then said "Well I hate to bring people bad news, but Camden will have to be casted, his curve has progressed from a 33 degree angle to a 44 degree angle in a little over a month". And once again, I felt that lump in my throat since we had talked about this possibly being "resolving", I was already expecting this but hearing him talk more about it made me sick. I could tell by the way Camden sat that it was getting worse and feeling of his back every single day. I had already prepared myself for this news.

He will stay in the cast for 1 year to 18 months depending on his rapid growth. We will visit Dr. Stasikelis and his team every 6 weeks for Camden to get his new cast placed. Dr. Pete is a perfectionist, he wants the spine to be a perfect ZERO before he stops placing the cast, which is fine by me because I would rather my baby have a good healthy life but what kind of mom wouldn't?

My mother has been doing so much research on Infantile Scoliosis and found a group for mother's that are going through the same thing. I finally looked at it and found just the person I needed to talk to. She is a mother going through the same thing I am but her timeline is ahead of mine. Her son(Jackson) went through the same thing Camden is going through now at the same age! Jackson was placed in his first cast when he was 15 months old, he was at a 50 degree angle. He is now on his 9th cast and is spine is at a 4 degree angle!! I KNOW UNBELIEVABLE!!! His mother(Jennifer) has given me a sigh of relief, she has kept me up to date with how things go and what could possibly happen. She has been very encouraging, just listening to her I know that I can get through this and it's not the end of the world, although sometimes I may get weak it even happens to her STILL but I have to be strong for Camden. Of course I do get scared but I keep thinking to myself "Morgan this could be so much worse" that is when I thank God for giving Camden only this.

I pray and pray for those mommies that go through more than this because this is tough enough to deal with.

Camden's first cast will be placed on April 11th,2013. I pray for my strength and for my families strength to get through the things that we cannot change right now.

Camden's x-ray from March 6th, 2013 at Shriner's

 This is Jackson in his 8th cast! I know most people don't know what a cast looks like and lots of people think it has more to do with the body but it doesn't. Jackson runs, plays, jumps, dances and pretty much anything else that his cast will allow him to, or should I say he doesn't care about that thing he will do it anyways! Him and his mother are definitely an inspiration on us!

Stressful

We had the MRI done on February 27th at Children's at Egleston this is one thing that I was so stressed out about. I had so many mixed emotions I didn't know how to feel on that day. I couldn't feed Camden after 8:00 that morning so that was scary and nerve racking because those who know the kid loves to eat! While we were out that way we decided to take advantage of this and take a visit to The Varsity(Camden's first trip). He did so awesome! I was such a proud momma because he never whines or fusses about anything especially when he couldn't eat for so long. We finished up and headed over to the hospital to get this over with. His appointment was scheduled for 1:00, we signed in and had to wait to register him. We proceeded downstairs where they took him back to the little baby rooms, with the little baby hospital beds. The nurse had to check all of his vital signs and make sure he was well enough to be put under anesthesia(which he was).

He was in the clear so now they had to stick him with the IV (in his foot since he likes to suck on his fingers and hands), he HATED that and I was just fine throughout that. The doctor came in and talked to us about what was about to happen and that's when I felt that terrible lump in my throat and that nauseated feeling in my stomach. I was about to see my baby be put to sleep and taken away from me for about an hour, this was so scary. No mom deserves that feeling at all. As he laid there asleep I just cried and cried, I was put in the scariest situation I have ever been in. I gave him a small kiss on the forehead and walked into the waiting room.

An hour had passed and the nurse came out to get me. I asked her before I walked back if he was awake, she said "he's awake, but his eyes are still closed" I was so nervous about this. I wondered if he was going to get sick, or be very ill. As I walked back he was lying there rolling around and as happy as could be but his eyes were still shut. I picked him up trying to keep him from his head falling back or forward. He ate his bottle right away, and his eyes opened up and he was back to the happy baby he normally is, so that was a relief after that we were released to go home.

A few days later we got the results it came back NEGATIVE!!! No tethered spine or anything wrong  with it. Just a massive curve! We got all the results and the MRI photos and have to go back to Dr. Stasikelis at Shriner's on March, 6th for him to take another x-ray and read the MRI. And again, I had a lump in the back of my throat.

These are some photos of Camden right before his MRI...

Here are the results from Camden's MRI. They are pretty self explanatory:

Our first visit

We finally got an appointment to visit Shriner's Hospital on February 6th to meet Dr. Pete Stasikelis and his team. I have heard so many AWESOME things about him and I couldn't wait to meet him and talk to him about this problem.

We made our way back to the waiting room, and everything happened so quickly. First the physician's assistant came in to speak with us for a little bit about Camden's spine, to answer our questions and to take notes. He evaluated Camden and how he interacts with us. He was hoping that Camden's scoliosis would be "resolving" which means to curve would eventually straighten as he grew. Well I got very happy about that. It was a releif to know that he was so positive about this. But still in the back of my head I was thinking that it wasn't right.

After evaluation, Dr. Pete came in to evaluate Camden also. He said that most likely this was Progressive Infantile Scoliosis because of his RVAD(rib verticle angle) and of course my heart sunk to my stomach. I thought that I was going to puke after hearing that. He ordered Camden to have an MRI done so that we could be at ease that is was nothing to do with his spinal cord, and that he didn't have a teathered spine. IF that was the case they would have to treat that before we could take another step further.

Dr. Pete had recommended having Camden "casted" (there is not ONE person that I have spoken to who knows what exactly this is). He explained that this would be a hard plaster cast that would be placed around his torso, he would be put to sleep. The cast would be placed every 2 months because of his rapid growth and this could go on for a year to 18 months just depending on how much his spine would be tricked to grow in a different way and until it was completely straight at a 0 degree angle. This is a very positive pocedure from what I have heard from so many other mom's. It is very effective and is almost 100% curable.  Of course there was a lump in my throat after this was given an option. I was nauseated I would have never thought! This still wasn't 100% yet because we still weren't sure if this would cure itself or not. We scheduled to have the MRI done on February 27th, and I was NOT looking forward to this at all.

This is a picture of Camden's back while he is sitting up unsupported at 5  months old. Notice he leans more to the left and his RVAD (rib verticle angle) is out more on that side.

Answers

I guess I forgot to mention in my last post that Camden was born on his due date, September 5, 2012 at 8:10 p.m. Yes, I was in labor ALL DAY. So this post would put him at 4 months old, poor baby. Can't catch a break!
Camden's pediatrician schedule us to go see an orthopedist so on Monday, January 21st since the curve was a 33 degree angle according to Children's Hospital in Atlanta. I was really looking forward to this appointment to find some kind of answer as to why Camden's back was this way. When we got to the appointment, we were the only ones in the waiting room. I felt like we waited FOREVER! We finally got to the back and met Dr.William Schmitt, he informed us that Camden's back was only a 23 degree angle, to do some stretches with him and to come back in 3 months and we would go from there. I was so relieved by this, it made me so happy to learn that my baby didn't have scoliosis and that stretches would help this. Well any mother would want a second opinion from any doctor even if they do tell you the same thing just so you are at ease with the whole situation. Some of these doctors are not as smart as they seem. So a few days passed by and we made an appointment to go to Shriner's Hospital in Greenville, South Carolina to see doctor Pete Stasikelis who is the BEST doctor known to man on February 6th.  I was still in denial about the whole thing because I never thought something like this could ever happen to us but again I knew this is what we needed to do for Camden.