4 TENDER SOULS... Their Story - PART IV

2012

Without a doubt 2011 was one of the hardest years we had ever had, with the struggle to get Camden here, the fight to keep Stacie with us and the battle to keep Reed moving and Payton healthy.  Our fighting was looking to have paid off! Camden’s follow up visit with his surgeon in January showed that Camden’s surgery in December was helping as he was not having as many ear infections as before. He was starting to get back to his happy and active self in no time. Unfortunately, not everyone was getting back to their normal selves.

In late December Reed noticed some swelling and some new bruising starting to develop on the left lower area of his back. Over the last several months he had seen an increase in pain. In fact, it had become so bad that Reed was sleeping in his recliner because laying down intensified the pain and numbness in his lower back and it radiated down through his left hip and leg.

The swelling was new though, and the doctor was very concerned about whether there were more ligaments that were torn again, or that Reed was having a reaction to the hardware. Reed had some X-rays at the end of January that were concerning enough that at the beginning of February the doctor ordered an MRI to check the fusion and surrounding levels.  A week later, the doctor ordered a nerve conduction study to check for signs of nerve damage in Reeds legs. We scheduled an appointment in March to review the test and to then make a decision on what we could do for Reeds symptoms.

During the same time that Reed was going through his testing, Stacie was also having some tests done due to the amount of pain and discomfort she was experiencing. She had a colonoscopy and some imaging done to check for signs that the endometriosis had affected her internal organs. It wasn't until a follow up doctor visit at the beginning of March that they found a lump on her lower quadrant of her abdomen. It was big enough to be concerning and, in March; Stacie went in for her 12th laparoscopy surgery. 

The doctor found that the lump on Stacie’s left side was an endometrioma, which had been growing for some time. The doctor was even more astonished when he discovered that Stacie had more endometriosis spread throughout her abdomen and pelvis. The doctor removed the endomertrioma, the endometriosis implants, and was also able to do a scar revision; as he found that some adhesions had formed around the area and wanted to fix it while he was already inside the abdomen. Stacie was able to recover without any unexpected problems and was discharged from the hospital after a day or two.

This year was already turning out to be more than we had bargained for, but not all of it was bad. Our little baby boy had his first birthday towards the end of March and it was amazing to think back on how much had happened in only a years’ time. He was full of energy, laughter and brought a lot of happiness to our family. He was definitely worth the fight to get him here, as he made everything else afterwards that much more worth fighting for.

In March, Reed’s body threw in a little extra gift with the birthday celebrations and he got kidney stones, again. The first round of kidney stone had happened in 2007. It was also in March that Reed went back to follow up on the results from his test in February for his increasing back pain and leg weakness. The MRI came back showing that there was some bulging and foraminal narrowing at 3-4 and 4-5 levels; the level he had fused, as well as the level directly above his fusion.

To make it worse his nerve conduction study came back showing that he had a marked chronic L4 and L5 radiculopathy in his legs. Due to the changes that were seen in Reed, it was decided that the hardware needed to be removed.  For some reason, Reed seemed to react to the hardware used to fuse the disc and he had some improvement after his last hardware was removed.  The only problem was that the metal had to be in for at least a year before it could be removed to allow the bone to grow and let the fusion become solid.  Reed was scheduled to have the hardware removed in August, when they felt his fusion would be solid and stable enough to remove it. They would also redo the foraminotomies and repair any torn ligaments if needed.  A few days later Reed went in for a couple nerve root blocks to calm the nerves down enough to allow Reed to get through the next few months until his surgery.

Then, one day, while Reed was rocking Camden to sleep in the recliner, Camden started complaining of his tongue hurting. Reed noticed that Camden had some sores on the tip of his tongue and thought it was a canker sore. A few minutes later Reed looked at Camden’s hands and noticed that Camden also had some spots there too. Thinking it could be chickenpox; Reed checked everywhere and found that Camden had blister-like marks that mostly covered his hands, feet and mouth. We took him to the doctor the next morning and he was diagnosed with a severe case of Hand, Foot and Mouth.

He had sores all over his body and mouth and even down his throat. It hurt him to even eat or drink and the poor little guy would just whimper every time he tried to. It was extremely hard to see him so miserable and it just continued to get worse over the next few days. His feet had developed so many blisters that they covered the entire foot and they became so swollen that he couldn't even walk.

When we put him down, he would rock back and forth on his feet trying to take the pressure off of them and then start crying because of the pain and frustration.  It broke our hearts to see him in so much pain and discomfort and not be able to do anything to help him.  Unfortunately, with hand, foot and mouth, it just takes time to resolve. After a few days the blisters on his hands and feet turned into scabs and started peeling off of his hands and feet. 

Luckily for Camden, he had an older brother that was big enough and loving enough to carry him around until he healed and was able to walk on his own again.

Payton was not only running around with his younger brother, he was also running around on the soccer field. We found one of the best ways for Payton to cope with all the stress that comes with his mom and dad’s medical problems, as well as his little brothers and his own, was to be involved with something like sports. Payton is naturally athletic and absolutely loves sports, but especially fell in love with soccer. He was lucky to start learning the game from his uncle and cousins and continues to play around with some of his closest friends.

With all the hormone changes that were going on with Stacie's body, in June, she started to notice a painful lump in her breast.  When she mentioned it to her doctor, they immediately ordered an ultrasound for Stacie the next day. Given the fact that the pathology reports from her uterus and ovaries came back with precancerous cells on them, and with the way her body was handling the shifts of on and off hormone replacement, we began to worry. During the ultrasound the lump was very noticeable and worrisome to the tech doing it. She called the doctor in and, to be on the safe side, they had Stacie do a mammogram right then. Thankfully, it was determined that it was a large lymph node and we were told to keep a careful eye on it and to come right back if things became worse.  That was the best news we could have heard!

It had been about two months since Reed’s nerve root blocks and it seemed to keep Reed’s back pain at bay, but something else was starting to develop. In mid-June, Reed started to develop symptoms of an infection with increased fatigue, headaches, body aches, chills and nausea. After a week he also developed a sinus infection, the second time this year, and was started on an antibiotic. This infection turned out to be the start of what would be an ongoing battle of continuous illnesses.

Stacie was also still having ongoing symptoms and ever since her surgery she had been having drops in her blood pressure and arrhythmias. Her doctor was following her closely due to her unique history, and when she started to have an increase in her symptoms, along with muscle cramping, he sent her in to have IV therapy to receive fluids and some electrolytes as well as some anti-nausea medications.

Stacie called Reed, who was at work, to inform him that she was there and that the nurses were just coming in to get the IV started and that she would call him back. It was only 8 min later when Reed received a phone call; only, it was not Stacie who was calling. It was a nurse calling to inform Reed that Stacie had had an allergic reaction to the IV therapy and they had to call a rapid response and take her to the emergency department.

When Reed arrived to the hospital he found Stacie struggling to catch her breath and having chest pain. There were so many people in the room treating Stacie that Reed couldn't get anyone to answer any questions as to what had happened to her. It was later explained that Stacie had had a reaction to a medication that was put into the IV fluid. She was treated with some medications to stop the allergic reaction. After a 12 leak EKG and after being monitored for a little while longer, Stacie was finally released to come home.

In July, both Payton and Camden had a follow up appointment with their ENT doctor to check how they have done since their last surgeries.  Camden was not doing well with tubes in his ears, in fact, it seemed to make things worse.  He was beginning to have more sinus and ear infections. We could tell it was really bothering him, as he was always pulling at his ears. Payton’s tubes had never fallen out on their own like there were designed to do, and when the doctor checked them she found that he had developed some tissue around the tubes that wouldn't allow them to come out on their own. 

The doctor felt that they both needed to have their tubes removed. So, on July 31st they both went in to have surgery to fix their ears. Camden’s adenoids were removed as well. They both got through the surgery without any complications and seemed to recover quickly.

In august, Reed went in for what would be his fourth back surgery; his second back surgery in a 12 month period. The doctor was able to remove the two rods and four screws, adding to Reeds metal collection, and removed some bone and scar tissue that was obstructing and compressing on his spinal nerves. The doctor said that Reeds ligaments seemed to be intact and that his discs were holding up.  There were no complications with the surgery and after a few days Reed was discharged home.

Reed tolerated the surgery well, but struggled with the recovery.  A few days after he returned home, Reed started swelling around his incision so much that he could not sit down or lay down due to the amount of fluid and pressure that had built up. He started to feel very dizzy, weak and nauseated. It became so bad that Reed was told to go to the ER; for fear he may have had contracted meningitis. As soon as the ER doctor saw Reed’s back, he became very nervous and ordered brain scans and CT scans. 

The ER doctor said that he had never seen a patient’s incision become so swollen after a back surgery. They paged Reed’s surgeon, who looked at the scans and felt that they did not show signs of meningitis, but they could not explain why Reed was having the unusual swelling. He allowed Reed to go home with instructions to follow up in his office a few days later.  It ended up being another symptom that could not be explained.

Getting Reed through his surgery and complications must have been a little bit harder on Stacie then she thought, because she started having some episodes of arrhythmias and changes in blood pressure. Her blood pressure would suddenly drop without warning into the 70/30 range and her heart rate would drop into the 40’s. It was causing her to be short of breath, very dizzy and get almost to the point of passing out. It seemed to happen more often at night and became so bad that Stacie was becoming increasingly worried about even going to sleep in fear that she may not wake up.

Stacie was referred to see a Cardiologist, who ordered a stress test followed by a Holter monitor so that they could record the events and find a way to fix the problem. They determined that her hormones were dropping due to her autoimmune disorders which, in turn, were causing her blood pressure and heart rate to drop. To this day, Stacie continues to fight this problem and is working on how to manage it with her doctors.

By October, Stacie was seeing some change with her arrhythmias but it was not the only change she started to notice. Stacie started to have the pain again around her incision and a lump in her abdomen was growing. We were sent to see a general surgeon who discussed what he thought the problems could be and what he wanted to do to correct them.

He suggested that the likelihood that Stacie would have endometriosis was very unlikely being this far out from a total hysterectomy, as well as a surgery earlier in the year, but due to her history he wanted to rule out the possibility of endometriosis. It ended up being a good decision as with Stacie’s 13th laparoscopy they found more endometriosis spread throughout her abdomen and pelvis, as well as several abdominal adhesions. He removed the implants and adhesions and also performed a scar revision to remove scar tissue that had grown around the nerves in her abdomen. After the surgery they had some trouble controlling Stacie’s blood pressure but were finally able to get it under control and Stacie had no other complications with her recovery.

Reed was also recovering better with his surgery, but started to have the infections reappear. In September Reed was having symptoms show up again and was again started on a month long antibiotic.

By the end of October, Reed started to have some pain in his jaw and in his front teeth. He had a post put in one tooth when he was 12 years old after having knocked it out and now was wondering if something was wrong with it.  He went into see the dentist and he ordered some x-rays. The Dentist took one look at them realized something was wrong. Reed had developed an abscess that had grown large enough to cover the four front teeth in his lower jaw. He was sent to see a great endodontist and after reviewing Reeds x-rays and performing a MRI of his jaw felt that Reed needed to have an apicoectomy, an endodontic microsurgery, to remove the infected tissue. The endodontist cut and lifted the gum away from his teeth so that the roots were easily accessible. 

After he opened the tissue near Reeds teeth he could see the underlying bone and found a large amount of infected tissue that he described as “black bacteria”. The infected tissue was removed along with the last few millimeters of the root tips on each tooth. He carefully checked and sealed each tooth root and finished by stitching up the gums. It was very sensitive and delicate and the Doctor even instructed Reed not to pull out his bottom lip to show people for fear of pulling out the stitches. Reed had the stitches in for a little over a week but was told that the bone could take up to a year to heal.  This procedure ended up being the start of Reeds significant weigh loss.

Also in October, Stacie was still trying to manage her hormones changing due to her autoimmune disorders that were still causing her blood pressure and heart rate to drop. She had to go into IV therapy to receive fluids and medications. Camden came some of the times to add some moral support and to make sure his mom was brave.

Reed had been attending physical therapy for his back and was also exercising several days a week. At the beginning of December Reed started to see the difference the surgery and therapy was making and he started to think that there was hope to managing the disc degeneration. He was able to be part of the Christmas celebrations and ready to start a new year.

The day after Christmas Reed went out to start his car and warm it up before going to work. On his way back into the house Reed slipped on some ice and went down hard and fast. With no time to react Reed landed on his side taking the full impact on his rib cage and hip. He got himself up and went inside. He sat by the door for a while debating whether to wake Stacie up to tell her about what had happened, but then felt he would only cause her to worry more about him. So he decided he would tell her later and left for work.

He struggled throughout the day and later he finally told Stacie what had happened; to which she broke down and started to cry. She knew how long Reed had waited to finally be feeling better and the thought of Reed injured and lying on the ice was too much for her. Reed went a few days trying to push through some discomfort and pain, but continued to find it difficult to breathe. When he started having some noticeable brushing on his ribs a few days later, Reed went in to see the doctor. 

They found that he had broken his ribs and they were concerned about the possibility of Reed damaging his back, especially since they had just removed his hardware only 4 month earlier.  It was devastating to Reed because after a few years of pain, procedures and surgeries, he was finally starting to see an end in sight and within a few seconds it all changed. By the end of the year Reed had started to see signs that the fall had indeed affected the back fusion.

2012 was finally coming to an end and we could not have been happier. With all that had occurred in 2011 we had hoped that this year would have been easier to get through, but it seemed to only leave us weaker, discouraged and overwhelmed. Everyone in our little family endured at least one surgery this year, with some having had multiple surgeries. We came across some illnesses that were new to us, and we were hoping to get over some others that have plagued us for a long time.

We’ve often gone through hard times trying to be self-reliant and appear stronger than what we truly are so that it will lessen the burden on our family and friends; those for whom we felt responsible. We’d smile in public, but cry in silence and pray every night that we can do it all over again the next day. We built up our walls, dug in a little deeper, grit our teeth and put our heads down; preparing for the onslaught that we have come to learn is all but certain to be heading our way.

But if there is one truth that we have learned through all of this, it is the fact that we were never meant to fight alone; we had never been alone! In fact, it wasn't until we removed some of our walls and lifted up our heads that we were finally able to see the army that stood behind us. Our family and friends had surrounded our little family and were willing to sacrifice and fight for us when we just couldn't do it anymore.

There is something to be said about the renewed strength one receives when seeing others stand shoulder to shoulder with you fighting in your behalf. It has given us the power and strength to meet our challenges that come our way. We may not get to choose our battles, but we can choose how we fight them.





So although our battles rage on and are not yet out of sight, we keep our heads lifted, for we know we’re not alone in this fight! Our Heavenly Father had given us more than just the strength to overcome our trials; He had given us the ability to see the blessings we were receiving from them. We often speak of tender mercies after going through our trials, but in this case, our Heavenly Father was allowing us to see our tender mercies so that we COULD get through our trials!

We had made it through 2011, and we were able to endure through 2012; but we were about to take it to another level with what was about to happen in 2013…