Week Three Post Op: Learning to Walk

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11 NIV 

Up and Moving - Day Three - Post Dorsal Rhizotomy

The day started early. The neurosurgeon came in to check on Hunter and the fluid is still in his back. It concerns the doctor. But, it's not enough of a concern to do surgery yet. The plan was to get Hunter sitting up and moving more. Hunter has been on his back since Friday. The neurosurgeon still hopes that the fluid will re-absorb and is watching it closely. He wants Hunter to start physical and occupational therapy today. He also granted us access to hold him. It didn't take long for Hunter to be in our arms. When breakfast came, the smell of food motivated Hunter.. He sat up on his own and fed himself.

Hunter with Dad. There's nothing that motivated this kid like food!

It wasn’t long after breakfast that Hunter got his first visitor. She was Hunter's occupational therapist. This was an exciting time. She sat Hunter crisscross applesauce style. Hunter could never sit in this position because of the spasticity in his legs. He would cry out and fight it before. However, this time was different. The tone was gone. Hunter successfully sat crisscross applesauce comfortably. The occupational therapist was also impressed that Hunter could sit up without much support. This is rare for the first day of therapy after this surgery. It really shows how resilient Hunter is.

Physical therapy came in the afternoon. They took measurements on Hunter's range of motion. They will compare this to measurements later in therapy.  Hunter is very guarded of his incision. He is scared of the pain. Therefore, he didn't cooperate with the physical therapist. She says the pain gets better quickly and this is typical of first day therapy.

It is truly the small things you learn to appreciate when you have a special needs child. Seeing Hunter sit crisscross applesauce is the highlight of our day. It’s our first indication that the surgery was successful. This gives us hope, an overwhelming feeling of anticipation that our child might be able to do things that children without disabilities can do. It leaves us excited for Hunter’s future.

Hunter is still very sore. He still cries out when we try to move him or change his diaper. But, his incision is healing nicely.

CrissCross Applesauce. Look at how relaxed those legs are!

Day Two - Dorsal Rhizotomy Post Operation

Hunter's neurosurgeon met with us this morning to discuss Hunter's next steps. Hunter's back is still swollen and full of fluid. They aren't sure if it's spinal fluid or bleeding of some kind. The only way to know is to put Hunter back in surgery and explore. His neurosurgeon isn't in any hurry to do this. So, the plans are to keep Hunter as calm and mellow today as possible. He hopes that with rest, the fluid will re-absorb into the body, and surgery will not be needed. 

The Incision

The fluid in his back is a setback. In a normal Dorsal Rhizotomy, Hunter would be sitting up today. They would try to get him moving as soon as possible. However, since he is having this complication, the doctor ordered him to lie flat for another day. Hunter was supposed to start physical therapy tomorrow. But, this has been delayed for now.  They removed the epidural from his back and switched to oral Oxycodone and Tylenol. For the most part, Hunter seems comfortable. The only time he is not comfortable is when they try to move him. The slightest movement makes my poor little guy scream. It breaks my heart.

The neurosurgeon will evaluate the fluid tomorrow. Surgery is not ruled out yet. But, he will try everything first before putting him through that again. Hunter is usually so active. I never thought I would see my child lie on his back for an entire weekend. I thought this was impossible. In fact, when the neurosurgeon told me that Hunter couldn't move for two days, I said to him "In no way, would this happen". I was wrong.

For now, this is how Hunter spends his time.

Day One - Post Operation Dorsal Rhizotomy

Hunter started out his day with smiles. He was wide eyed, lifting his arms up for anyone to help him get out of bed. The neurosurgeon came in early. After he looked over Hunter, he said that Hunter was doing better than he could expect. His orders for the day was to keep Hunter on his back. He switched him from clear fluids back to a general diet. He said tomorrow afternoon will be the day we get him out of bed. This will be a slow process. It will start with them gradually sitting him up.

This afternoon was eventful. Hunter had special visitors into his room. The first visitor was Marty Turco. Turco began his hockey career at U of M. He spent one season with the Chicago Blackhawks, another season with the Boston Bruins, but spent most of his time with the Dallas Stars. He was a goalie. The second visitor was Jeff Backus. He started his football career at the University of Michigan. Afterwards, he was drafted into the Detroit Lions and played his entire career with them.

Marty Turco, Dallas Stars (Left), Hunter, Jeff Backus, Detroit Lions

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His Grandma, Grandpa, and other visitors came to visit. We started to notice that Hunter was getting tired. When the afternoon nurse came to check his incision, she noticed that it was swollen and the bandage was leaking fluid. She called the doctor. The resident came in. He was concerned and called Hunter’s neurosurgeon. Hunter’s neurosurgeon advised him to take off the bandages of the incision to see if something his incision was leaking. This was entirely heartbreaking and painful for Hunter. He pushed, squeezed, and pinched the area that is swollen. Hunter had a very rough time with this. They changed the bandages and are waiting the night out to see if more fluid leaks out. Hunter ate a grilled cheese sandwich. Starting at midnight, he will not be allowed any more food until the Neurosurgeon sees him tomorrow. This is precautionary, in case in has to go into surgery tomorrow. The doctor doubts he will need the surgery. But, it will depend on what the bandages look like in the morning. If surgery is done, they will be checking for internal bleeding. Hunter is resting peacefully right now.

Hunter's Next Obstacle - The Midline Dorsal Rhizotomy

Life has got in the way and it has been awhile since I have wrote in Hunter’s blog. I have been enrolled in school full time and adjusting to life as a single mom. As you can imagine, this has me busy with little time to sit down and blog.

Hunter has been doing really well. He has been healthy. We still struggle with his vision, speech delays, and cerebral palsy. The Retinopathy of Prematurity still has a stronghold on Hunter's eyes. It worries me that his vision continues to get worse and I dread his vision appointments.  He has been going to pre-school. His school works with an IEP.  He receives his speech, occupational, and physical therapy. In addition, they bring an outside consultant in to work on vision and mobility with him. The school he attends is wonderful and I can't speak more highly of the entire staff that works with Hunter. Despite his disabilities and developmental delays, Hunter is normal as he can be. His disabilities does not define him whatsoever.

Recently, Tim and I had to make an important decision on Hunter’s medical treatment. We met with Hunter’s Physical Medicine and Rehabilitation Doctor. Hunter is outgrowing Botox injections. In previous blogs, I wrote that the Botox injections were used to reduce the spasticity in his legs as a result of the cerebral palsy. Under her advisement, she suggested that we start looking at more long lasting, permanent forms of treatment.

Our first option was a Baclofen Pump. The pump would have a catheter that was inserted into his spinal fluid. The pump would provide constant medication and would reduce spasticity. However, Hunter is diplegic. This means that the cerebral palsy only affects him from the waist down. Baclofen would affect his entire body. In addition, Hunter is too rambunctious to have a pump attached to him. This spelled nightmare and many late night emergency room visits to re-insert the catheter when Hunter would yank it out.

Our second option was to do nothing. Let Hunter be how he is. This means that eventually the spasticity in his legs would start wearing his joints out and cause him pain. He would always walk with his walker. Hunter is capable of so much more. So, this was not an option either.

Our last option was called the Midline Selective Dorsal Rhizotomy. It is an intensive surgery. The Rhizotomy requires the surgeons to go into the nerve roots in the spine and start clipping them to permanently reduce the spasticity in his legs. We chose this treatment option and Hunter goes into surgery on Friday, May 17, 2013.

We had our last visit with the neurosurgeon's office today. We found out that the surgery will last for approximately five hours. They will break apart his spine and get to the nerve roots, they will attach a machine and figure out which nerve roots are causing the spasticity in his legs. After they know which nerve roots are affected, they will clip them. It is our hope that this will reduce the spasticity. Our goal is to have him walk independently after months and months of physical and occupational therapy. 

However, recovery is not easy. Once the surgery is over, Hunter will be in the hospital for 14-21 days. They will give him the weekend to rest. They will start extensive inpatient physical and occupational therapy on Monday, May 20th. They warned us that this day will be hard on Hunter. He will still be very sore from surgery and they will have him moving around. Hunter will have to learn everything again. They will start from the beginning and move forward. He will have to learn how to roll over, crawl, and walk. Hopefully, when he learns to walk again, he will walk without a walker and/or his range of motion will improve significantly.

Initially, they warned me that when Hunter comes out of the surgery, the tone that he has relied on will be gone. It will appear that the surgery has set him back. He will be in a wheelchair for approximately 3 months. As he progresses through physical and occupational therapy, his condition should improve and our ultimate goal is to see him walking independently. After his release from the hospital, Hunter will be in therapy 3-4 days a week for a year. Therapy will last a couple hours on each of those days.

With all this said, I am going to activate his blog again. I will be blogging through Hunter’s entire transformation. I can’t wait to share his struggles, progress, courage, strength, and determination with the world. It is my dream to see my child walk, run, and play with other children. I know that a miracle is around the corner. I know Hunter can do this. Now, I want to share this with you. Please stay tuned for his progress.