Cast Day is Here!

Cast day is here! Alex will receive the first of several casts to help correct his scoliosis. Currently his curve is 58 degrees.

Up at 4 am in the morning to get ready to leave for the Children’s Hospital in Atlanta. I don’t think either Tom or I slept much the night before. A little worried about our little Alex and how he would do today. The last time that we were at CHOA (Children’s Healthcare of Atlanta), was for TJ’s torticollis release surgery. They are a great hospital. We don’t mind making the long drive to Atlanta, the care doesn’t even compare to the hospitals we have here.

All the bags were packed, GPS ready and all we had to do was wake Alex up. We felt bad because he wasn’t allowed to have any formula past midnight. We didn’t want him to be hungry and hoped that he would just go to sleep after we got him in the carrier. I let Tom wake him up and change his diaper. He was wide awake, smiling as usual as Tom got him ready to put in the carseat.

All ready in the car. Ready to begin our Journey. The ride to Atlanta is about an hour, as long a traffic is good. We were hoping that at 5am it wouldn’t be to busy. We made it in about an hour, so not to bad, and Alex slept the whole way.

As we get Alex out of the car and put him in his stroller, he gave Tom and I a look that just broke our hearts. He knew that he was at an unfamiliar place. He looked at us like “Mommy and Daddy what is going to happen?” I know he trusted us, but seemed a little nervous. But it doesn’t take Alex very long to get back to his happy self and smile.

Smiles on our way!

Smiles on our way!

When we finally found our way to the surgery floor, we signed it and got him registered. It was only a few minutes before they called us back to get him all checked in and ready for his procedure. The nurse took his temperature, his blood pressure and his weight. He loved having them check his heart beat and tried to eat the stethoscope.

Alex day of 6

We tried to lighten the mood and try and have some fun memories before they came to take him.

Alex day of 3                       Alex day of 2                       Alex day of 5

Once the Doctor came in and answered all of our questions, it was time to get Alex ready in his gown and hat and tiny socks.

He looked adorable. My little squishy happy baby. The doctor’s asked what color cast we wanted. We finally decided on black. We joked around that he could be BatBaby and ride in his batmobile that my dad made.

Alex in gown 2         Alex in gown

The hardest part of the procedure is when they take him back to the OR and you can’t go past the double doors. We had a great nurse named Dina that Alex just loved. I was so happy that I caught the most precious picture of him looking at her. She talked to him like he was her own son. She kept telling him that “Aunt DiDi is going to take good care of you”. So precious.

Alex and Dina            Alex to OR

Alex was in the OR for about an hour. He had a team in there with him.  His two doctor’s, their resident, the orthopedic team and his nurse.He was one of the youngest to be put in an EDF cast. EDF (Elongation, Derotation, Flexation). It is a process where Alex is put on a special table called a Mehta Casting Table. This special table allows the Doctor’s 360 degree access to put the cast on him. They first Elongate him (stretch him out) and then Derotate him (rotate his ribs to be back normal, currently his right rib cage sticks out) and then Flexation (make sure that he can move his hips/legs).

About an hour after he went back, Nurse Dina called and said they were just finishing up on his cast and he would be in recovery for a little while. Immediately after the phone call, both Doctors came in and talked with us about his cast. They were very pleased with their first cast with Alex. They said he looked like Batman and had used Batman tape. We were very thankful that they did not have to cast over his shoulders or cast part of his thigh. They gave us some basic info on cast care and what happens next.

A little while later, the nurses brought in my non squishy baby. He seemed worn out and just coming out of anesthesia.

Alex after   alex after cast 2 alex after cast

It took him about an hour of sleeping when the anesthesia started to wear off. They wanted him to drink some pedialite, but he did not like it. When he finally started to come to, he sucked down a bottle. Then my little non squishy baby started to be back to his old self. Here is one of the first pictures of his cast.

Alex in cast

After the anesthesia wore off, we had to wait to be discharged. After we were discharged, we had to go to the Doctor’s office to have xrays done to see how much the cast reduced his curve. Once we got the xray back we learned that his curve was reduced to 40 degrees. Not bad for a first cast. After the xray, we had to go to Orthotics to have his cast trimmed and fitted a little better.

I don’t know what was worse, the procedure or Orthotics. Once we got there, I guess I did not know what they would be doing to “trim” the cast. That was almost the scariest thing that I had ever witnessed. My little non squishy baby on a table, surrounded by several Orthotic people with goggles on, on top of the table with him, holding blankets over Alex while I hold his hands and a “saw like” device that cut the cast. It was like a moment out of a horror movie. Alex crying, doctor with loud noisy blade that vibrated the cast. We finally got the cast trimmed about 1/2 inch on the top, under the arms and off the bottom.

In the beginning they had a special tank top that he wore. The tank top was made of a special material that had silver strands woven into it to help with moisture and to help protect his skin. We were a little worried that the tank top would allow for the underneath of Alex’s arms to rub. The worker let us know that they did have a turtleneck version that had sleeves that may help. We opted for that. She did cut and sew the neck so it was like a t-shirt. After about an hour there, we were finally done.

Tom and I were so tired and hungry. By this time, it was about 2:30pm. Time to head home. Alex was definitely ready.

ride home

We were now ready for the Journey of how to live with the cast……

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Alex’s Last Day Before His Cast

Trying to enjoy my squishy little baby before he gets his cast. It has been a crazy week for us, so I didn’t have much time to worry or even think about tomorrow’s casting procedure.

Giggles

We tried to make sure we had lots of fun with squishy Alex. Snuggles, Giggles and Rolling. Alex had finally figured out how to roll and roll and roll. I am hoping he will still be able to roll in his cast. Not sure what to expect tomorrow, but feel like I had read as much information as I can and thanks to my new Facebook Group, had a lot of the common questions answered.

Rolling Rolling Rolling

We made sure to have lots of fun with Alex and his bath. We gave him his favorite rubber ducky. This will be his last “bath” until he gets his cast off. We will have to sponge bathe him from now on. I am sure he will be so sad, especially since he loves to splash and splash.

Bath Time with My Ducky

Bath Time with My Ducky

Lots of things to remember for tomorrow. We will be traveling to the Children’s Hospital in Atlanta to have his first EDF cast put on. We need to be there at 6am, which means we need to leave our house around 4:45 am in order to get there. Trying to get diaper bag packed, our bags packed just in case there are complications and we may need to stay. (I am always prepared for anything). Got my checklist of bigger diapers, bigger clothes, bottles, Alex’s favorite blanket and teething toys.

There are so many things that are running through my mind. Praying that little Alex will do well with Anesthesia and that he will be comfortable in his new cast. I guess that Tom and I are not as worried as most parents probably would be. TJ had to have a cranial helmet and I remember in the beginning we were totally freaked out. We had no clue about what life was going to be like with a cranial helmet. After a while, it just became the normal. We really didn’t notice it.

I just prayed that the doctor’s will be able to help Alex and get a good cast. They are not sure if they will have to put the cast over his shoulders or on part of his thigh, due to his size. He is a tiny little peanut.

I am officially a blogger!

I guess I am now an official blogger. Never in my right mind did I ever think I would blog. I never knew why I would even want to blog. Why would I want everyone to see everything I do? Isn’t that what Facebook and Twitter are for? But here I am. Blogging away, intrigued by the art of blogging.

So most are probably wondering why now to start blogging? My son is actually the reason. He was recently diagnosed at 2 months old with EOS (Early Onset Scoliosis) or Infantile Idiopathic Scoliosis. In short, his spine is curved. Apparently this occurs in 1% of babies.

As most good parents do, they research, they research and when they are done researching, they research so more. I wanted so badly to connect with other parents who had similar stories. I couldn’t find much, until I ran across a mother who had been blogging her daughter’s journey with Infantile Scoliosis and a few Facebook Groups. I thank God for her every day and for the groups. It may seem boring to some that she posts everyday life with her daughter, but it meant the world to me. Her blog hosted valuable information to me. There weren’t any books on what it really was like, but she had pictures and stories and answered the questions that we are all dying to know.

So this blog is dedicated to any parents that are looking for a way to connect and learn more from the journey that I am about to begin. I will post the amazing Journey that God has put before us, every step of the way. It also will be a way for me to feel good with the fact that our Journey can help others.