Foramen Magnum & C1 Decompression

 

Cooper underwent his second Foramen Magnum & C1 Decompression surgery on Wednesday December 9th, 2015.

 

 

The day before surgery was spent getting pre-op labs and getting admitted to the hospital. The labs were no fun, but Coop handled the 3 pokes like a champ and even got a Beanie Baby which he loved. We also got a haircut and he was thrilled about the balloon.

We checked in for surgery at 11:30 AM. Coop was very unhappy because he had to fast since midnight the night before.

We have been teaching him to sign and he was telling us all morning he wanted food. He would just cry and cry and it was so hard to watch him so hungry and unhappy.

We met with all the doctors before surgery and gave our boy goodbye kisses. It is unbelievable hard to walk with the doctors to the yellow line on the floor, then hand over your baby and walk away. Coop was a champ but I think the parents need sedation as well as the patient…

 

Surgery time was about 4 hours. Tommy and I got some lunch in the cafeteria and had some friends come visit. Then we just waited for news from the doctor.

Doctor Bollo said that the surgery went great. Coop did awesome with anesthesia and didn’t have any problems during surgery. He did loose a lot of blood, but didn’t require a transfusion. He said that a lot of bone had regrown around his foramen magnum since the last surgery. He removed the bone regrowth and scar tissue. He also said that it was very difficult for him to find C1 once he opened Cooper up. They had to bring in radiology to make sure they were cutting in the right location because it had appeared so superficial in the MRI’s, but actually ended up being much deeper and much more compressed than the testing showed.

Coming out of surgery they kept Cooper on oxygen cannulas but he was doing pretty good breathing room air. He was really calm and would dose in and out of consciousness. When he would fall asleep his O2 levels would drop in the 80’s, but when he was awake he would pull off the nasal cannulas and his levels stayed about 90 (where you want them).

When we finally got to see him in recovery after his last surgery he was screaming and seemed to be in so much pain after surgery. This time this wasn’t the case. He was calm and wasn’t fussy at all. I think that will all of his anesthesia experiences we have finally figured out which drugs work well for him. They did keep him tired to help with his pain, but the anesthesia experience was wonderful. I think Propofol is our magic drug for anesthesia.

He also had big red marks on his face from the cranial holder that they put his head in during surgery. They have to put him facedown and upside down, so they have to secure his head in the holder. But the red marks went away pretty soon afterwards.

We stayed in the Recovery Room about an hour and a half. He held my hand it was adorable to watch him heart rate accelerate when he finally saw me and Tommy.

They made sure Coop was stable and then moved him to the Neuro-Trauma Unit on the second floor of Primary Children’s Hospital. Last surgery stay they had to keep Cooper in the infant unit PICU because of how little he was. This time he was able to be on the Neuro floor and didn’t even need to stay in the PICU because he did so great after surgery. The doctors were very excited about this.

It was so nice for us to be on the Neuro floor because the knew exactly how to care for Cooper. The Neuro team was constantly right there to answer any questions. Our nurses were amazing. It was such a relief to not have to constantly be telling our medical staff how to do their jobs (like we did last surgery visit) because they were absolutely wonderful.

An hour or so after getting Coop settled in his room, Tommy and I finally went down to the cafeteria to get some much needed dinner. When we left Coop was fast asleep.

When we returned from dinner, Cooper was wide awake and had two nurses in his room spoon feeding him yogurt. The nurses couldn’t get the yogurt in his mouth fast enough. The poor kid was starving and he was letting them know.

The cute nurses were loving him. He drank two 8 oz bottles of formula, ate an entire strawberry yogurt, and had a sweet potato baby food. He even cried when the yogurt was gone and the nurse stepped away to throw away the container. On his third bottle he finally fell asleep with the bottle in his mouth and he was down for the rest of the night. Tommy and I left to head home to sleep so we could be back early the next morning.

Day 1 POST OP:

The next morning when I got to the hospital Cooper’s color looked better. He was still pretty drowsy and slept a lot. There were lots of doctors in and out of his room. They had been very concerned about how he was breathing. His oxygen levels were staying about 90, but his respiration rates were very high and he was breathing very shallow. They had the lab come to draw some more labs to see if they could pin-point anything abnormal going on.

They took his bandages off and we were pleased to see his incision looked great. A Respiratory Therapist came to evaluate Cooper. Technically he wasn’t passing the breathing test with a score good enough to keep him on the Neuro unit, but the Respiratory Therapist and the Neuro doctors decided that the Neuro floor would be much better for Coop instead of being transferred to the PICU.

They also sent him to the ER for x-rays to take a look at his chest cavity. The x-rays came back with a possible respiratory virus, but they thought this was mostly just because of his abnormal shaped chest cavity.

His Geneticist Dr. John Carey even stopped in to see Coop. He was thrilled with how well he was doing. We love Dr. Carey and are so grateful to have him as a doctor.

He was awake most of the morning. He was calm, but not his smiley self. The only time he had even fussed since surgery, was when he wanted more food the night of surgery, and when they moved him from his bed onto the x-ray table. The doctors couldn’t quite figure out what to do to help his breathing, so they wondered if it was possibly that he was in pain and wasn’t breathing normally to try to compensate. So, they gave him some Morphine to try to see if that would help his breathing so that he didn’t tire himself out. This ended up just putting him to sleep for a much needed 4 hour nap.

When he finally woke up, we had our happy boy back. He was finally smiling and had a little bit of his personality back. It was so wonderful to see that smile the day after surgery.

He even wanted to play. He only had the one dose of Morphine, but I think that long nap was just what he needed.

He even had Spencer Hastings (look alike) from Pretty Little Liars as his nurse. She was so awesome. Tommy and I even had a date night in the hospital once Coop went to sleep. The morning breathing issue was scary, but the day ended on a high note and everyone was so pleased with his progress.

Day 2 POST OP:

Friday morning I was a little nervous to hear how Cooper was doing. Yesterday we had the breathing scares, but today was the day Dr. Bollo said we may be able to go home. I didn’t know if he would be ready to come home yet, or even if I would be ready to have him home.

When I walked in his room he was a whole new kid. Full of energy, kicking his legs, and was so happy and just wanted to play.

We could finally hold him and the doctors were so happy with his mobility so soon after surgery. I even went to wipe his face, and he pinned my arm with his leg. This was incredible. He had always been able to use his legs, but this had so much strength and force. The doctor saw it happen and was so thrilled. They called to have PT come to his room to get an assessment on his leg strength post operatively.

The physical therapist came and Cooper was so happy to have someone play with him. She even brought him a mat so he could play on the floor. I wish I could have captured the excitement in his eyes when he finally got out of his hospital crib and got to play on the floor. It was adorable and he was thrilled.

 

He spent a good hour rolling around and crawling all over his hospital room. His head and neck was little stiff, but that sure didn’t stop him.

  

I really didn’t think he would be crawling all over just 2 days out of major neurosurgery, but this kid never ceases to amaze me.

It really was like he didn’t even have surgery. He had more energy than I have ever seen. He must have been storing up the last 2 days of play energy.

It was so nice to feel like we had our playful Cooper back so soon after surgery, and I was beginning to think it was going to be hard to keep him entertained in the hospital any longer.

He kept trying to crawl out the door to the cute nurses. He would wave and flirt with them at the desk. He even passed his sitting test and loved the cute chair that PT brought him.

  I just love this photo even though it’s blurry, because I think it perfectly describes that morning of day 2 post op. So happy to be out of bed and to be a kid again.

So after hours of playing, we decided Mr. Energy needed a nap and to take it easy, he did just have major surgery 2 days ago… So we tried to put him back in bed and to see if he would crash…

He didn’t… He just kept trying to yell to his nurse friends to come play with him. So we decided it was time to escape the hospital. They hurried up his discharge paperwork and we went home Friday afternoon.

 

We got home and it was as if the last few days were just a blur. Cooper was so happy to be home. Now we can just worry about recovery and get ready for Christmas! We are so thankful for a wonderful surgery and quick hospital stay!

 

 

 

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3 thoughts on “Foramen Magnum & C1 Decompression

  1. We love reading about our Cooper Star! He’s so strong & amazing😘

    On Saturday, December 12, 2015, Just Small, That’s All wrote:

    > shantaylowell posted: ” Cooper underwent his second Foramen Magnum & C1 > Decompression surgery on Wednesday December 9th, 2015. The day before > surgery was spent getting pre-op labs and getting admitted to the hospital. > The labs were no fun, b”

    Liked by 1 person

  2. I’ve never had the opportunity to meet Cooper, or you and your husband. But I wanted to say thank you for sharing his journey with us. I randomly stumbled across your account on IG when Cooper’s sweet face showed up on my news feed. I clicked, and I was hooked. I’m a mother of two boys (ages 1 & 2) and I couldn’t help but melt when I started reading your story. There is something about that sweet boy that is captivating. His smile beams of joy and strength!
    I’m so happy for your family that Cooper’s surgery went well, and that he is recovering ok. My thoughts and prayers are with him, and you. It is clear to see that God has mighty plans for that little man! You are a mama that I admire, and thank you again for sharing his journey!

    Like

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