Archive | August 2013

Caring for A.J.

Andrew Joseph Bay age 2 1/2 was recently diagnosed with Acute Lymphoblastic Leukemia (ALL).   He is currently undergoing aggressive therapy. He receives chemo every week and is taking four medications daily and five on the weekends. His treatment will continue over the next three years.

Each day is so hard on him. He cannot go out an play like other kids as he has no immune system because of the treatment. He also has very little stamina. He sleeps a lot and does not have a huge appetite. Although popcorn and slurpees are his favorite.

A website has been set up to help the family as the medical care costs are beyond what the family can handle.  The family really needs financial support as their ability to work is diminished because A.J. has continual have medical appointments as well as has to be watched closely 24 hrs a day. Also, the costs of the medications is above what the insurance company will cover. Please if you can donate any amount to help him and his family through this difficult time it would be greatly appreciated.

https://fundrazr.com/campaigns/2a3E4  Getting ready to eat his popcorn AJ and daddy

Life sometimes takes turns

In the past few months

In April after a long discussion with my Neurosurgeon and husband I decided to go ahead with the surgery to remove the Arachnoid cysts which were growing in size and put more pressure on my spinal cord.  The two known cysts had formed in the Arachnoid space in my thoracic spine. My symptoms  of numbness in my legs, gait disturbances, feeling of spiders crawling down my back and legs, and over-all pain had increased as well making the decision for surgery fairly easy.

The procedure was explained.  A  small 2-3 inch incision would be made down the middle of my back, then the spiny processes would be removed at T4-T7, and then the cysts would be drained and removed.  The spiny processes would then be put back into place with small screws. The procedure would last about three hours in length. I would then have an overnight stay in the hospital.  I would have some physical limitation of no lifting anything over 5 lbs for at least six weeks, no strenuous exercise for 6 weeks and no driving for at least a week.

On May 3rd the surgery was performed. The surgery took about 3.5 hours. There was one complication in that I bled more than they thought and two pints of plasma were required. The doctor stated that the surgery went well. He stated that the cysts were a bit more tangled than expected, but despite that all went well. I was up and walking the next morning. I felt pretty could minus the soreness  at the incision site.

I was discharged home later the day after my surgery. My discharge instructions were to walk as much as possible, no lifting anything over 5 lbs., no bending or reaching due to the fall risk, and to rest as much as possible.   I was also discharged with several medications Neurontin 600 mgs twice a day, Amitriptyline 20 mgs at bedtime, Flexeril three times per day,  and Hydrocodone 10-325mg every 4 hours for pain. Over the course of the next 7 days I appeared to be healing well and felt pretty good. I was doing everything I was told.

Second surgery

On May 10th I felt  more sore than I had the previous day. I was still feeling pretty good. My family even celebrated Mother’s Day on Saturday May 11th with a nice dinner. It was wonderful to see everyone. I continued to become more sore over the next few days. On May 12th, Mother’s Day, I got up and took a shower anticipating going to church and celebrating Mother’s Day.   The cramping in my back became so severe that I knew something was wrong. My husband agreed that we should go to the ER.

I was taken back after waiting almost two hours in pain. The pain increased with each passing moment. I was immediately connected to an I.V. and given the pain medication Dilaudid. The pain was reduced, but the nausea that this med created was horrible. I was given Zofran which helped with the nausea.  Another nurse came to check on me later and my pain had increased. She stated she could give me more Dilaudid. I told her that it made me very nauseous. She said she could dilute it and push it slower over a 2-3 minute time frame. I agreed. It worked and no nausea.

After several tests including an MRI it was determined that the cysts had reoccurred and a second surgery would have to be performed. I was admitted to the hospital again. The next morning they ran several more tests and attempted to get my pain under control with using a combination of oral pain meds and Dilaudid. My husband and I both made sure that the nurses diluted the Dilaudid and pushed into the IV slowly.   My doctor came in later that day and stated that I was definitely going to need a second surgery.  I was back in surgery the next morning. The doctors explained that the he used a microscope to make sure the cysts cleaned out. My incision was larger now and closed with staples instead of sutures.

After spending 5  days in the hospital. I was discharged home with the same limitations as before along with a long list of medications.  I was now taking Neurontin 600 mgs twice a day, Amitriptyline 20 mgs at bedtime, Somma 350mg every 6 hours, Robaxin  750 mg three times per day,  and Hydrocodone 10-325mg every 4 hours for pain.  Although when I arrived home I found that I could not lay on our bed because it was painful to lie on the staples. Also, it was very hard to roll in either direction. I could not sit nor stand for two long because my back would begin to spasm. But as time passed, the incision continued to heal and sleeping in bed became much easier and the use of pain medication was reduced.  But it was not over yet.

Third surgery

I began to really feel much better. I even went to the local market night with my family. I walked around and was able to go out to dinner with them. It had been 11 days since my last surgery.  But the next morning that all changed. I began having severe cramping in both my legs as well as spasms in my back. Again, I returned to the ER.  I was immediately admitted. This time a mylogram was done to see if they could determine exactly where the problem was. At the same time a spinal drain was placed. It was the hope of the doctors that the drain would relieve the pressure by removing the excess spinal fluid from around the area. This was not a painless procedure.

For the next two days spinal was drained every 4 to 6 hours.  The pain it caused when it was drained was incredible. It caused my legs and back to spasm as well as light-headedness.  On the third day it was finally decided that the drain was not working so it was removed and the muscle relaxants and pain meds were increased to control the spasms and pain.

After much discussion the only option was surgery.  The doctor stated he needed to place a drain. The only option was not a good one. He stated that a shunt would be placed in the spinal cord and drain into my stomach via a tube. He was not keen on this as there is a high failure rate as well as another surgical incision had to be made into my abdomen.  He left my husband and myself feeling  scared and unsure of what this really meant.

Later that afternoon my physician returned. He stated he came up with something had never been done but he was confident it was the best of action. He stated he was going to place two pieces of titanium tubing in the arachnoid space allowing for better flow and reducing the risk of the cysts returning.

It was a much better option than having a shunt drain into my stomach. So I was prepped for surgery the next morning.  The surgery was a success.  I spent two more days in the hospital. I returned home with much soreness, but better use of my legs and noticed a reduction of spasms.

It has now been 3 months since this last surgery. I am getting back to a more normal life. I still have pain and spasms but they are far less. I would consider this success. I can at least now enjoy more things in life such as hiking, playing with my family and kids, swimming and hopefully more things to come.