Nolan is just 2 days out of surgery so I am pinch hitting for him as a guest blogger. Hopefully, Nolan will be well enough to do the next blog sometime soon.
Time Warp
It is 7:30 am on the morning of our son Nolan's 2:00 pm brain surgery. Julie and I are both dressed and ready to go. Nolan and his fiancee Sarah are at the Neurosurgeons office doing a pre-surgery MRI with the purpose of marking Nolan's head with reference points that will be used later that afternoon in surgery.
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| Surgical Reference Points |
They agreed to call us when they were on the way to the hospital so Julie and I had a few hours to kill. We found the hours leading up surgery to be uncomfortable, filled with emotion, and tense. Fear of the unknown can be paralyzing. It sounds silly to say but, time was nearly standing still. Minutes felt like hours. We finally decided to go and get some lunch near the hospital, more as a distraction than because we were hungry. Finally, they called and we were on the way to the hospital.
Pre-Surgery Family Moment
When we arrived at the hospital, Nolan was already in the pre-surgery staging area. We went back and chatted before surgery. Nolan's mood was confident, and calming to all of us. He faces difficult medical situations like his grandfather did with humor and grace. Nolan's sister Jessica arrived, as well as Sarah's parents. In spite of all the medical preparation, we managed some small talk. Time came for them to take Nolan back for surgery and we all had a bit of an emotional meltdown. We live in a time of incredible understanding of the human body, amazing medical machinery, and we trusted the skilled hands of the surgeon we had so painstakingly selected. We had every reason to be confident but the moment they roll your child away to brain surgery is one of emotion and fear. It is truly a "nothing else matters" moment.
The Value of Friends and Family
As we walked out to the waiting room, I was wondering how we'd deal with a 3-5 hour wait during surgery. We passed the time with a small group of very close friends and family and it was truly enjoyable. My brother Tony made the long trip in from Northern Indiana which was an excellent and welcome surprise. Time seemed to be moving along at it normal pace now and for that, I was thankful.
The Results
At about the 3 hour mark, we got the call that surgery was over and we met with the neurosurgeon in a consult room. Dr. Skidmore said the surgery went perfectly and they were able to decompress the tumor to some degree, which might or might not have a positive effect on vision. He removed the portions of the tumor that could be safely extracted without fear of damaging the optic nerve. Skidmore's prediction based on the MRI images was that the tumor is a low grade optic glioma and he said the surgical analysis further confirmed his educated guess. We won't know for sure until the pathology report comes back.
Surgical Recovery Room
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| Surgery Recovery |
Those of you who have spent time in surgical recovery rooms know the effects of anesthesia can be entertaining. Sometimes I wonder if the drug makers leave this lingering effect just to take a little pressure off of a family seeing a loved one immediately after surgery.
Drug induced funnies:
- Calling his fiancee Sarah by the name "Snarnzorbs"
- "Dad, am I to understand that I have been diagnosed with Diabetes and recently lost 50 pounds"
Touching drug induced moments:
- "Sarah, just hold my hand for a while"
- " Dad, will you stay with me until Sarah gets back"
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| Sarah coaxing a smile out of Nolan right after surgery! |
Sarah Baumann is Nolan's fiancee. They are engaged to be married on July 2nd. Sarah has stood by Nolan every step of the way in a situation that might have sent lesser women running for cover. We are so proud of both of them and see the love they have for one another. Sarah is special and Nolan is lucky to have her.
We were all a bit surprised at the size of the incision. It is 30 staples covering a horseshoe shaped area of 7-8 inches. None of us ever asked in the pre-surgery consults what the incision would look like and the surgeon never thought to mention it. The photo actually looks worse than it is and once the staples are out, we are confident the incision will smooth out nicely. The entire incision is in the hair line and this will be a total non-issue in a short time.
What Next
Pathology is supposed to be back early next week. At that time, we should have a clear diagnosis on what the remaining tumor is. Once we have that data, we will be off looking for the best doctors and facilities available to treat that condition. Dr. Skidmore tells us we will likely be referred to neuro-oncologists to determine ongoing treatment protocol.
For the moment we are enjoying a highly successful surgery and happy to have Nolan home and starting the recovery process.
One day at a time!
Hospital Stay and Recovery
The first evening of recovery was tough. He had a pretty good headache going which is no surprise, and the nursing staff kept him well medicated. He was not allowed to recline to more than 45% and said he could not get comfortable with the head wrap. Restful sleep was hard to come by. There was a drainage tube coming out of the incision in his head that had to be emptied regularly but the drainage subsided fairly quickly. You can see the drainage tube in the photo above coming down into the front pocket on the gown. Rumor has it (Nolan told me) that Sarah got a good nights sleep that first night but Nolan did not.
The day after surgery was a little odd. Nolan seemed to be doing very well physically and was managing pain primarily with Tylenol but his demeanor was far from normal. He is typically a very upbeat and positive person but was struggling and frustrated with the down time. Deep breathing exercises and walking were prescribed as "things to do" and Nolan was uncharacteristically uncooperative on those items. Sarah had the best sense of when to stop pushing and in the end, it all worked out fine. I was a bit worried about him that evening and traded some messages with Sarah. He's been through a lot physically and emotionally, and pain killers are a depressant so it should have been no surprise he might struggle a bit in early recovery.
The following morning, the head wrap came off and we saw for the first time what you see below.
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| The Bandage came off |
We were all a bit surprised at the size of the incision. It is 30 staples covering a horseshoe shaped area of 7-8 inches. None of us ever asked in the pre-surgery consults what the incision would look like and the surgeon never thought to mention it. The photo actually looks worse than it is and once the staples are out, we are confident the incision will smooth out nicely. The entire incision is in the hair line and this will be a total non-issue in a short time.
Dismissed
Nolan improved throughout the day, ate well, and was returning to his normal self. Surgical drain was removed and he was cleared to go home. It was amazing to me that less than 48 hours from the end of surgery, he was in the car, feeling relatively well, on the way home to rest and recuperate.
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| Escape from St. Elizabeth |
What Next
Pathology is supposed to be back early next week. At that time, we should have a clear diagnosis on what the remaining tumor is. Once we have that data, we will be off looking for the best doctors and facilities available to treat that condition. Dr. Skidmore tells us we will likely be referred to neuro-oncologists to determine ongoing treatment protocol.
For the moment we are enjoying a highly successful surgery and happy to have Nolan home and starting the recovery process.
One day at a time!
