Scheduled Surgery

I've experienced six surgeries in my life.  Three c-sections, a tubal ligation, appendectomy, and a cholecystectomy completes my list of surgeries. All of these surgeries were performed on an emergency basis.  

As my calendar turns from September to October, the reality of a scheduled surgery smacks me in the face every time I flip the page. If I want to schedule a dinner, an appointment, or an outing with a friend, the reality of surgery and recovery is looming on October 23rd.  

A hysterectomy isn't a hesitation for me.  I've dealt with problems for years and it is a logical option and a choice at this time. I've been in pain for years and it's time for the surgery.   Full recovery should take  six weeks at most, driving privileges after two weeks.

What strikes me harder is that just beyond a hysterectomy is my brain surgery.  My neurosurgeon wants me to have surgery by March.  It seemed far away when he first mentioned March.   However,  as I stare at my calendar, I realize I will be recovered by December.  Then I will deal with the holidays and then in full swing with life through January and February, and March will be here before I know it. 

My head will have a massive zipper scar down the back in less than six months and it doesn't rest well with me.  My anxiety level is high, perhaps higher than when I faced this with both my sons  brain surgeries. 

Instead, I focus on accomplishing things I have wanted to do for a while.  I conquered my fear of heights by climbing a rock wall.  

Even though I am crossing off a bucket list, I also enjoy the little things in life lately. I tend to memorize my children's faces  and listen to their little voices.  I stare at the colors of the sky and notice the leaves on the trees.  The warmth of the sun on my face is intoxicating.  It really is a wonderful life.  

Gabriel's Surgery

When Gabriel does things, he chooses to do them big.  This includes surgery.  Rather than tubes in his ears or adenoids removed, he has major brain surgery. 

The morning of July 15, Andrew carried Gabriel to the car at 5:15 am.  We have taken him to things in during the early morning hours and he simply slept in the car.  Instead, Gabriel told us that he was angry about being in the car at night time.  It was time to quit going so "forward-er" and go home.  It didn't take long before he told us that he didn't want to go the doctor's office. 

Given the situation, it took all my strength not to turn the car around and cancel his surgery time.  The few days before his surgery date, I stared at his beautiful head that didn't have a single mark on it. He would soon have a large incision in the middle of the back of his head.  

We continued to the hospital and upon arrival, I dropped Andrew and Gabriel off at the front doors while I parked the car.  Gabriel threw himself on the ground and yelled at us for bringing him to the hospital at night.  We managed to get to the second floor.  While I registered him, Andrew continued to de-escalate Gabriel.  Gabriel pulled hair, scratched Andrews face, and yelled.  I'm glad there was only one other family in the surgical area with us. 

The nurse called Gabriel to the pre-op room.  He was still angry that it was night time. The sweet staff attempted to calm him down and talked to us about everything.  When it came time to go back to surgery, the staff attempted every trick they knew to get him there 

They decided to skip protocol, dressed both of us for surgery, and Andrew and I escorted him down the hall.  When the operating room doors home, reality smacked me hard.  There were twelve nurses and doctors waiting to perform brain surgery on my baby.  

I held the tears in, somehow, as Gabriel jumped into the wagon. The anesthesiologist grabbed the mask as the three of us rubbed his arms and he calmly went to sleep.  The nurses move him to the bed and we kissed him good bye.  My lovely son awaited his surgery. 

The nurses escorted us out to te waiting room and told us that we did an excellent job with Gabriel.  The also said that most kids that anxious don't calm down like he did.  In a way that made me feel better 

Major Surgery In One Week

Next week at this time, we will be preparing for major surgery. Gabriel has been scheduled for decompression surgery on July 15th at 7:30 am. We have to arrive an hour early.
I'm teetering between being numb and bursting into tears today. Neither one will help this situation or make it go away but I am an emotional wreck. The neurosurgeon said, "this is major surgery but it isn't as invasive as removing a tumor." It was meant to put everything in perspective for us but it makes the fact hit home that a stranger will be in my son's head, manipulating his brain.
The surgeon will remove the top vertebrae, part of his skull, and the cerebellum tonsils that are hanging into his neck. There is also a cyst that needs to be drained. The surgeon doesn't know if the cyst was mislabeled and he actually has hydrocephalus. So there's that - hydrocephalus - a buildup of fluid inside the skull that leads to brain swelling.
The recovery could take 2-5 days in the hospital. The surgeon said that children who aren't as complicated, medically and behaviorally as Gabriel, are usually there for two days. It will take a couple weeks until he feels like himself and then he will be completely recovered in six weeks, given no complications.
Please do not give me credit for handling this well or for having more strength than you can imagine. You would do the same thing I am doing and your heart would be breaking apart to bits as you watch your son today, knowing what he is facing in just over a week. You would take on the surgery yourself if it meant he didn't need to do it. You would need support and strength from people near and far. You would feel desperate and weak. You wouldn't be able explain the absolute fear that rocks you to your core when you consider brain surgery for your child.
Yet you would have hope that his quality of life would improve in six weeks. You are an adult and you have to slap a smile on in order to maintain some type of order in your household. You would feel grateful that there is something to relieve his symptoms, even if it isn't a cure. You would fail in your attempt to thank anyone who steps forward to help.
Put yourself in my shoes and think about how difficult it will be to hand my child, my firstborn "baby", over to a stranger next Tuesday so they can remove bone from his head. It could be you. I never thought this would be me. I'm sure most people aren't prepared for these things.

Strabismus Surgery - expotropia

We were told that Lane would need eye muscle surgery after she turned four years old. Unfortunately, when we went for a check up at the pediatric ophthalmologist, it was determined that Lane lacked muscle control and her eyes had gotten worse. She had a high liklihood of losing vision if she continued with the poor muscle control. We had already tried patching and it didn't help at all. To err on the side of conservative, her doctor decided that surgery needed to be done prior to this coming summer. It was a disappointment for us as we weren't expecting it yet.
As the surgery date grew near, my anxiety and fear rose. The lack of control over the surgery was daunting to me. I also didn't want my tiny three year old daughter to feel pain and fear. I would take her place if it was at all possible. Deep in the recesses of my being, I knew everything would be okay but I am an emotional being and it was impossible to shake my anxiety.
Thankfully I am friends with a (former) child life specialist. She was kind enough to send an email full of ideas to help Lane understand her surgery. I am grateful for her ideas because I know that what I did, based on that email, helped her a lot. We practiced the mask on a doll and on each of the children before our departure. She giggled as the pink plastic cup touched her precious face.
Our plan was to divide and conquer the day. I would take Lane to the children's surgery center an hour away while Andrew took care of the boys and their school schedule. Our friend (and babysitter) lives near the surgery center and offered to help me during the surgery and recovery time.
The morning of the surgery arrived and Lane cried because she wanted her "big family" with her. She was incredibly disappointed that her brothers weren't coming with her. We wanted her to be as calm as possible so we called the school to let the teachers know that the boys wouldn't be at the school. She was much happier when we all traveled with her to the surgery center.
Shortly after our arrival, Lane and I were called back to prep for surgery. Lane put on a little gown. She was not happy that the gown had tigers on it and talked to the nurse about changing the gowns to include more girly options. She decided that butterflies, horsies, or purple would be a much better choice. I had her baby and blanket her Granny made for her with us. She asked for her princess blanket right away. Her vitals were taken and she was such a brave, happy girl. My stomach was churnng but she didn't have any idea that I wanted to curl up in a hole and emerge three hours later.

We talked to the anesthesiologist about practicing with a mask and she thought that was a great idea. Apparently it isn't the norm to practice with the mask. She brought us a chocolate flavored mask to play with while we waited. I had no idea that the masks have a flavoring choice now!

Lane did a great job until she was given versed. She spit it out and cried. I was told that it tastes terrible. Unfortunately, we had to hold her down to administer it through her nose.
Another sweet nurse arrived and carried Lane to the operating room. She was going to put her in the bed but the doctor said that Lane was too smart to put in the bed and they needed to carry her there. As they carried her away, I quietly said, "please take good care of my princess."
I went to the waiting room where Andrew had returned with the boys after taking them to breakfast and the pharmacy. Renee had Starbucks for me. What a treat! It would take 45 minutes to cut the muscle in her eye and leave two small stitches.
It didn't seem like 45 minutes when they called my name to go back and get her. Lane was not a happy camper when I got to her bed. She was stiff and crying. I held her in the rocking chair, soothing her, trying to calm my sweet baby girl down. Soon she was snoring and the nurse brought juice and a popscicle. I was asked to get her dressed and moving. Even while I dressed her, she continued to sleep. She didn't want to eat or drink. Despite that, the nurse discharged Lane.
I carried a sleepy, uncomfortable child to the van. It wasn't easy to strap her into the car seat, knowing that in my arms was a better place for her. Alex and Gabriel were upset about their sister. Alex cried because Lane was in pain. On the way home, I held Lane's head up while she slept and gagged from nausea. Even though I was warned about bloody tears, the sight of them was startling. I was glad that the circumstances allowed me to sit in the back of the van with her rather than being stuck driving home while she was miserable.
When Lane was finally awake, she asked Daddy for a cake pop. She remembered that she was going to get one after her surgery. Oops - we didn't have one. Andrew went to the convenience store for donuts and that was a fair trade in her eyes.
She also had double vision when she woke up. She thought it was funny that there were two doors and two televisions in our bedroom. It has been difficult to wash the blue "yes" above her right eye that the doctor wrote there. It is a stark reminder to what we went through one morning.
It is the day after surgery and she is doing well. She is an active, busy three year old. We've already created art work, played with cars, and played a duck game. I have to remind her that she can't run and climb today. Lane's eye is bloodshot and we were told that it will look worse before it looks better. It will take three weeks for her eye to heal but we should be able to tell if the surgery worked before that time.
I sincerely appreciate the well wishes and encouragement. A surgery for my child is a frightening thing and I hope we don't have to face another surgery for a long time.

Crappy day

I'm very blessed. I am thankful that I have a wonderful husband, three children, and two dogs. We have a beautiful home and I have the ability to stay a home. We have two reliable cars. My kids have a room full of toys and closets over flowing with clothing Our pantry is full and there is even some extra money in our account.
Some days are awe inspiring. Those moments when a person needs to stop and fully enjoy every second. The birth of each of my children. Standing on the Great Wall of China and eating dinner in the Eiffel Tower. My wedding day was full of loved ones and sweet moments
Then there are those numbing, pain sheering days. The phone calls that a loved one has passed on from this life. The day I was told our newborn would be transported an hour and a half away. Each day I heard about an illness or disorder someone in my family would have to battle and learn to live with on a daily basis. Although I want to forget these difficult times, these days help me appreciate the mundane days that seem to blend into each other.
Despite being grateful for my life and knowing that things could be so much worse, some days are well, crappy. Yesterday was one of them. I really should have gone back to bed and skipped the entire day.
The day started with a glass shattering all over the kitchen tile floor. Our broom is at the other house so it was a challenge to clean up the many shards of glass. Throughout the day I found glass on the counter and in various parts of the kitchen.
I noticed the water pressure was lower than it had been since our move in the home on Friday. I checked all of the faucets and tightened them. Shortly after, the pressure returned to normal. I was quite proud of myself for fixing the problem. My proud moment evaporated when I read an email stating that the water pressure was due to a power outage and we have a boil water alert.
Swell.
I drove 40 minutes and took the kids to their old school to withdraw them. It took 45 minutes to complete the paperwork and the kids were WILD. They ran all over the great room and front office.
After the school adventure, we went to our old house to unlock the door for the cleaners. I loaded the van with our remaining items and headed to an eye appointment for Lane.
On the way to the appointment, I took the wrong exit and received a phone call that the home and carpet cleaners would not be able to complete the work. I usually do all of the cleaning myself but wanted to make this move easier on us by hiring help. So much for an easier move. (is there really such a thing??).
The boys yelled at each other while I meandered my way down busy I4. At one point Alex pulled Gabriel's hair and they both screamed at the same time. It was an eventful drive to the doctor's office.
I made it to the follow up appointment for Lane's eyes. The appointment time was 12:40. We were still sitting in the waiting room at 2:17 and the kids were WILD again. They were overly hungry and sick of waiting.
We finally met with the doctor and found out that despite the daily patching, Lane will need surgery. The surgery is an hour long and works 85% of the time. If we forego the surgery, she could have complete vision loss as well as an eye that is permanently outward. Three hours later, we were in our way home in pouring rain. I wanted to cry with the clouds but somehow held my tears in as I told Andrew about the results of the appointment.
I realized that the Harmony school was still open on our way home. I drug the kids in the school with the intention of registering the boys. The office staff originally told me that I only needed a lease or purchase agreement for the registration since we just moved in. When I arrived with the paperwork, she decided that I do need a second paper with our address on it. Somehow I have to get a utility bill with our current address on it. I don't want to waste time because I want Gabriel placed in the appropriate classroom immediately.
The day ended as it began, Alex dropped a jar of peanuts in the kitchen. Glass shattered everywhere. If it had been later than 5 pm, I would have hidden in my bedroom until Wednesday began.

Bilateral Myringotomy and Tubes

Our first child to have surgery was Lane Elizabeth. On May 2, 2011, I took her to Pierce Street Day Surgery Center to have tubes put in her ears. Though rationally I knew it was a procedure that had little risks, my anxiety still ran high. The thought of anesthesia and my little girl was terrifying.
Lane and I arrived alone at 7:30. Each step toward the door made me reflect on what I was putting her through and I had to continue toward the door alone with her, confident that we made the right decision. The receptionist was wonderful and welcoming. She handed Lane a Princess coloring book, crayons, and a shirt. I got a coupon for a free bagel and cream cheese.
We were escorted to Suite 11. This is where we sat while the pre-op nurse, anesthesiologist, and post-op nurse came in to talk to me. It was well over an hour before Laney was given versed.
Lane spit out most of the first dose but the nurse was willing to give her some more. I wish Andrew had been there to experience her loopy behavior. She kissed me and insisted on coloring her doll. She was a little floppy and tough to hold. I wish she could have talked because I have a feeling it would have been amusing.
I know the versed is for the child but there was a definite advantage for the parent as well. Her behavior kept my mind off the fact that she would have surgery soon.
A little before 9 am, the nurse took Lane from me. Lane cried but didn't protest as much as usual. I had to hold back my anxiety. It takes a lot for me to trust someone else with my baby. I wanted to carry her back and comfort her, not hand her to a complete stranger.
Instead I held my head high and walked down the hallway to get my free bagel. I had been warned that the procedure is fast and I wouldn't have much time to eat. I grabbed my food and free coffee (so much for the 20 year reunion diet lately!!) and sat at a table alone. This is when I hate being alone. I feel vulnerable and lonely during these periods of my life. Other people were surrounded by loved ones and I sat alone but the bagel kept me company. (I know, get over the pit party already!)
I was able to finish my food before the nurse called me to the conference room. I have to admit, I was comforted by the stories of friends who had children go through the same thing - it was a short procedure, there were few risks, etc... but it's still tough to know that your child will have a little mask placed over their mouth and nose to go to sleep. In fact, that vision paralyzes me. I should have never googled bilateral myringotomy. Parents should never know that their baby's ear drums will be cut. It doesn't matter how small the incision is - it's still an incision!
I met the doctor in the conference room, where I was told that Lane did great but did not have any fluid in her ears. This could be indicative of a true hearing loss since her ear drums are not responding the way they are supposed to - swell, we did a surgery for almost nothing. We will need to do more testing in a month and if she fails that, we will go to Omaha for the sedated ABR. Gabriel had the same test when he was 2 so at least I know what to expect with that test.
It will be at that point that we will know if she is hearing impaired or not - perhaps she has selective hearing or maybe a speech delay? The doctor also mentioned that we should keep autism in mind. It was at that point that I wanted to sob. At this slice in time, to her therapists and home teacher, Laney doesn't seem to be on the spectrum. Unfortunately, we were told the same things with Gabriel at this age so we will have to see what happens in the next slice of time.