|From Cell Phone Photos|
Let me tell you. This has been one heck of a month. Our little family has been changed forever. Mostly, our faith has been strengthened and our hearts are full of gratitude in ways they never have been before. You’ve become accustomed to me giving a brief overview of things up top then getting into how each of the children are doing in the “How the Kids Are” section. However, because all of us went through the same stressful events last week, I will give the details here, then give a post-mayhem view of how the children are down below.
A couple of months ago Sophie reached the pinnacle of her walking ability. I looked through our YouTube channel and found this video from the middle of October where she jumps at the end. I uploaded three videos that day in which she showed remarkable balance and willingness to run, dance and jump.
I looked for a video of her walking just before last week, but couldn’t find one. What I found was that shortly after those videos from the middle of October, when she began to fall over more often, wobble and refuse to walk without holding a hand, we stopped taking video of her walking. Almost all of the videos of her between the middle of October and now are of her sitting down. The one exception shows a wobbly Sophie walking while holding Mommy’s hand, two and a half weeks ago. At first you might see that video and think, “she’s just unsure of herself because there’s snow on the ground.” The sad truth is, she had lost her balance due to a physical problem in her brain cavity.
Being the wonderful mother that she is, Rochelle was far more alarmed by Sophie’s walking problems than I was. I maintained that there could be less harmful explanations for her problems, but Rochelle feared the worst and insisted that we take her in to the doctor for evaluation, despite a lack of other, (and in my mind) more serious symptoms.
On Wednesday last week (the 16th of December) we went to see our family doctor at Malcolm Grow Medical Center on Andrews Air Force Base. Rochelle’s motherly intuition was right in line with the doctor’s impression of Sophie’s situation, and we were referred immediately to a pediatric neurologist at Walter Reed Army Medical Center (thirty to forty-five minutes away) with an appointment for the next morning (Thursday).
We spent a very long time at Walter Reed having Sophie’s blood drawn, having a CT scan done, and waiting around to find out more. Eventually, they called us in, sat us down and showed us a scan of Sophie’s brain. In the right hemisphere of her brain, down in the area called the cerebellum, she had a frighteningly large black oval area. CT scans have a low resolution, and all they could be sure of was that this dark “mass” wasn’t supposed to be there and it needed to be removed at once.
Sitting there in that cramped office the news that Sophie’s brain had a large dark mass affecting her coordination and balance hit me like a truck. However, in my usual, stoic-t0-a-fault manner, I assessed the situation logically. My conclusion? Our whole family was about to change forever. Nothing would ever be the same. My wife’s reaction was more motherly and woman-like. She had to fight off a strong compulsion to break down in tears. She found the strength to keep the tears back because she didn’t want to stir up distress in Sophie. Rochelle managed to keep the tears back until Friday afternoon after three pm.
Because the dark area in the CT scan of her brain was the same color as the other dark areas that are supposed to be dark, they guessed it was cerebral fluid that had formed into a cyst somehow. They speculated it was probably a blood clot of some kind, but it could also be a tumor. If it wasn’t a tumor, all that she needed was for them to stick a straw in there and let it drain, they said (not in those words, of course). She would need an MRI to rule out a tumor. The neurologist arranged for us to be driven out by ambulance to the Children’s National Medical Center in D.C. for the MRI where there would be pediatric neurosurgeons, something Walter Reed does not have on hand, in case she needed full-blown brain surgery. Also, they had us make Sophie fast in anticipation of the surgery. That fast ended up lasting over forty-eight hours. It made Sophie very, very angry.
The ambulance didn’t arrive until late at night. I met Rochelle and Sophie over at the Children’s Hospital where we were put up in a room until the next morning when they would sedate her and take her in for an MRI. I went home that night, but in the morning I took Micah to school and went back to join Rochelle while Sophie was in her forty minute MRI.
The MRI was over around eleven in the morning on Friday the 18th of December, and she went in to surgery with Dr. Magge (pronounced “Ma-gee”) at 1:30 PM. After the pre-surgery preparations, they officially began the operation at 2:10. It was then that it hit me: my little girl was having brain surgery. That’s a big deal. Knee surgery is bad, open heart surgery is significant. Brain surgery is huge.
So in three days we went from, “Let’s have the doctor check her out just to make sure there’s nothing life-threatening going on,” to, “They’ve cut a slab of her skull out and they’re scraping a tumor out of her brain.” Rochelle and I both shed tears, finally, and we found great comfort in prayer.
My mind went over the events between the MRI in the morning and the surgery in the afternoon over and over during the surgery. An hour and a half after the MRI, Dr. Magge had come to meet us in the room where we were waiting with our baby, who was hooked up to four IVs, a breathing tube, and a zillion sensors for everything from heart rate to blood oxygen levels. He told us that the MRI revealed what the CT scan couldn’t – there was a thin layer of non-brain material (a tumor) surrounding the cyst of cerebral fluid. They needed to get in there to drain the fluid and scrape out as much of the tumor as they could safely get to without poking around too much in her brain. The area of operation was close enough to the spinal column that there was a terrifying list of possible side effects alongside the surgery.
The possible problems that could come up during surgery were worth it though, considering the fact that if the cyst continued to grow, it would continue to squeeze her brain until the pressure would one day become “incompatible with life,” according to one of the neurologists.
Sometime around six pm we were waiting to hear an update from the nurse who was in the surgery. She had been coming out every once and a while to tell us how things were coming along in surgery. However, she hadn’t been out for a few hours, and we were getting anxious. When we least expected it, the actual surgeon walked in to the waiting room. That meant he was done. I had to remind myself to keep breathing. What had happened? Did he have good news or bad news? The look on his face didn’t alarm me, it must be good.
He said that they had been able to remove all of the tumor that they could see, and she had been fine the whole time with no complications. We wouldn’t know if all of the tumor was out until they did a second MRI at a later time, but they had secured the piece of skull with titanium brackets and sewn her up with a single suture that would dissolve in three or four weeks. When Sophie woke up from the surgery she was mad at the world. She was still groggy and cranky, and she was hungry. The first thing she asked for was chocolate milk and bananas, and after a while she began demanding an apology from the hospital staff (“I want say sorry,” she said through sobs and tears).
That night a friend of ours from Church came out to get Rochelle and take her home, and I stayed with Sophie. The evening brought the beginnings of a terrible snow storm (not so terrible for me being from the Rocky Mountains, but terrible for the East Coast). At first the snowfall was slow and beautiful, but by the morning when they began to sedate Sophie for her post-operation MRI more than a foot of snow had accumulated on the roads.
Saturday morning she had her second MRI, then we went back to our room and waited. Sophie was cranky and hungry after waking from the sedation, but I was happy to see her recovering so well from the surgery. She wanted all sorts of things she couldn’t have since we were still introducing her back into a diet of solids. They couldn’t find a sippy cup for her to drink from, so we cut the tip of a bottle nipple wide open for her to use.
|From Cell Phone Photos|
As you can see from the photo, she was still groggy and angry. She also refused to give up the bottle, probably out of fear that we would make her fast again. Slowly, they began removing IVs and sensors as she proved to them that she didn’t need them. At first she was hesitant to walk, probably because of the IV still in her foot, but once that was removed I let her roam around the room a bit, watching closely to make sure she wouldn’t fall down.
Sometime Saturday afternoon Dr. Magge (the brain surgeon who did her operation) had seen the MRI images from that morning and came by to share them with me. While Sophie slept and a nurse watched her, the doctor took me to a computer to show me what he could see. He reminded me that the radiologist was the expert who would analyze the images and declare the final “reading.” However, being a surgeon with lots of experience in these things, he felt confident that the radiologist wouldn’t be able to find any tumor left. He showed me the before and after MRI scans, and the difference was staggering. There was still a cavity where the cyst had squished the brain, but that would slowly return to its natural form over time, he assured me. The channel that normally drained the fluid that had caused the cyst had opened back up to its original size, and that was the important thing for recovery. He assured me that she probably wouldn’t need any additional surgeries for this instance, and as long as the tumor was benign (as had been his impression when he held the mass in his hands in surgery), she shouldn’t require any additional treatment in the future.
I breathed a sigh of relief, but anxiously awaited the same news from the radiologist.
By Sunday, she was more stable on her feet than before the surgery. We arranged to have someone experienced with winter driving bring Rochelle to the hospital along with her mother, who had flown in Saturday from Mississippi. Sophie had been asking for mom, but the snow storm had closed most of the roads all day Saturday, and even the hospital staff had to sleep in the hospital Saturday night.
|From Cell Phone Photos|
The visit with mom went well. Sophie held her and hugged her for a long time before falling asleep on her. By later that evening when someone else came to pick mom up, Sophie was much more content (and mommy had painted her nails, so she felt prettier).
Just as a side note, brain surgeons are probably all wonderful people, very intelligent and capable at what they do, but I would never recommend letting one of them cut your daughter’s hair unless it’s absolutely necessary. 😀
By the evening that day, the doctors were talking about possibly discharging her on Monday, as long as she continued to recover so quickly. The only problem was that her last IV in her hand was beginning to hurt. After an hour of working with the nurses I urged them to remove it. They agreed and Sophie felt much better. Also that evening, the official reading of the MRI from the radiologist came in. From what his expert eyes could see, all of the tumor had been removed.
I called my wife and my mother. A wave of relief could be felt rippling throughout my world, in and out of homes everywhere we had family or friends. Through the magic of smart phones and Facebook, I had kept people up to date with as much news as I had, but this was the best news I had shared so far.
The rest of her recovery was still going perfectly. She held down all of the foods we had fed her, and she had plenty of energy between naps and sleeping at night. She didn’t sleep all through the night, but she also didn’t wake up more than should be expected. She was filling all of her diapers with copious amounts of urine, but she still hadn’t had a bowel movement, which was my only remaining concern (and it was minor).
That changed Monday morning. Take a look at this face:
|From Cell Phone Photos|
She was horribly constipated and required some assistance getting the feces out. I had to call in a nurse after looking under her diaper and seeing what was trying to get out. Without being too gross, let me just say that the process more closely resembled child-birth than a normal defecation, only without all the blood.
After that she felt noticeably better and she was exhausted. I’m getting ahead of myself though.
The best part of Monday was when the doctor visited in the morning and he mentioned that she would “possibly” be discharged that day. When I asked him what made the discharge possible rather than definite, he said it would be up to me. So, knowing that Sophie was recovering nicely and she seemed to be mostly back to her old self without showing any signs of being sick or having additional problems due to the surgery, I said I wanted to take her home as soon as possible. He said he could have the paperwork done in half an hour.
I rejoiced. So, after the laborious bowel movement, the nurse brought us the discharge paperwork, loaded Sophie into a wheelchair, and we went down to the parking garage where I couldn’t find my car. A kind parking attendant walked all over the garage in the cold winter weather pushing buttons on my key fob looking for my car. By the time he found it, Sophie had fallen asleep. I drove her home, expertly navigating the snow and ice-covered roads like anyone who grew up in the mountains should be able, and at long last we arrived at our home. Sophie was so excited she exclaimed, “yeah!” louder and with more enthusiasm than I had ever heard her do it before.
Rochelle had wanted me to take a picture of the view from our window in the room, but without seeing the full resolution image you might not be able to tell that we could see the capitol and the Washington memorial (among other landmarks) from the large windows. If you want to squint at the photo and try to see what we could see, check out the Cell Phone Photos album, or click on this direct link for the maximum resolution.
How the Kids Are
Micah handled it all very well, but we’re not exactly sure he fully comprehended the gravity of the situation. He did ask a few questions that indicated his concern, but he didn’t seem to be too upset by the whole ordeal, despite our explanations and descriptions of the operation.
In fact, he didn’t miss any school due to Sophie’s hospital stay. We had to have people pick him up from school Thursday and Friday, but on Monday and Tuesday school was cancelled due to snow, and their winter break began Wednesday (today).
In news specific to Micah, he is doing pretty well. Yesterday he broke down in tears when asked about a book he had left on the floor in his closet rather than returning it to its rightful place in the bookshelf downstairs. After several specific questions it turned out he was so upset because he had the intention of lying about the location of the book before I stumbled upon it during a routine check of his closet’s cleanliness. He knows there are severe consequences for lying, but he was equally upset by the possibility of consequences for intending to lie. I assured him that there were no consequences since he didn’t actually tell a lie, but that this was a good lesson on deciding ahead of time to always tell the truth.
|From Cell Phone Photos|
Sophie is doing very well. She’s laughing more, talking more, walking better and still a picky eater. She’ll repeat just about any word she hears, and is learning a lot of new words. She ate snow for the first time yesterday, she likes wearing bows on heard (present packaging bows) and can say, “bow.” She loves saying, “bless you” (buss-oo) when people sneeze, “excuse me” (a-mee-mee) when people burp, and saying “eyebrow” while touching your eyebrows. Also, she loves zippers, and is obsessed with operating them, no matter where they may be located (such as one’s crotch).
My favorite: Despite all the “bad” things the doctors did to her, she will tell you, “I like doctors.”
She came home to several new items mom and grandma had picked out for her, including a table place mat featuring the face of Sponge Bob Square Pants. She loves pointing to and naming the various parts of his face, and she even put a bottle of children’s Tylenol where the nose goes saying that it was his nose.
We’re really looking forward to watching her continue to gain her balance back and get back to where she can dance, run and jump. Her brain was squished pretty bad, and as it expands the capabilities that area is responsible for may get slightly worse before getting better (two steps forward, one step back, repeat). So far, though, she has made steady progress, and she has a prescription for physical therapy to give us an opportunity to work with professional children’s therapists to help her get back to where she was before the incident.
|From Cell Phone Photos|
The back of her head should heal quickly, but this was not what we were expecting for her first haircut. When a nurse began to remove little patches of her hair to make bald spots to place markers on her skull for the MRI, I informed her that she was the first person to ever cut Sophie’s hair. The poor nurse nearly died. She felt so bad, but I assured her it wasn’t a problem. We are looking forward to the day when we can even out her hair with a nice haircut that won’t look so odd. Luckily, the rest of her hair is long enough to do a kind of “comb-over” to nearly hide the large bald spot. It just makes her hair look really thin there.
The final chapter in this story will be written when the pathology of the tumor comes back in the coming week. Tomorrow I can call their office to check and see if the results are in. If the tumor was benign and harmless, then we will be mostly done with the whole ordeal and we can begin to move on with our lives without worrying too much more about this issue. If not, we may have chemotherapy or some other form of radiological treatment to overcome before completely leaving this behind.
I didn’t think to bring our regular camera to the hospital (it didn’t feel like a vacation), so all of the photos I took are in the Cell Phone Photos album. I’ll take more photos with the regular camera for Christmas though. Also, you can find at least one video of Sophie at the hospital on our YouTube channel. I uploaded two, but only one is available because of some digital errors in the second video. There is a fourth video, but it is impossibly long to upload from the phone, and it may have errors as well.
In case you’re wondering, Rochelle and I handled the whole thing rather well, considering. While it was happening, I didn’t have time to stop and think about it, but when strangers began commenting and offering their condolences, I realized that brain surgery on a little girl not even two years old isn’t something people take lightly. Rochelle and I received a lot of strength and support from so many directions, I can’t possibly thank them all. Of course, the largest source of strength for all of our family has been the Lord and His gospel. He has blessed us greatly. There are a number of amazing facts associated with what we’ve gone through that, summed up, point to only one conclusion – we were highly favored of the Lord in this matter.
The care we received at the Children’s Hospital was superb. The nurses were all wonderful people who genuinely cared for our daughter and even for our own wellbeing. On several occasions the nurses cared for my wife or me with the same tenderness as they tended to our little girl.
A representative from Tricare (our military insurance company) called today and assured us that everything would be paid for and that if we needed anything else just to be sure we went through our primary care provider for a referral. Even my military unit has offered their support in anything we needed.
Geographically we couldn’t have been in a better location without living across the street from the Children’s Hospital. This, of course, is due to when it happened. Had it happened any other time, we would have been in a less convenient location. Where we were living in California the nearest facility that could have helped Sophie was over three hours away.
I could sit here and type about the many blessings we received through all of this, but I’ll spare you the word count. Regardless of whether you helped by prayer or by driving us through the snow, putting yourself and your property in harm’s way, we thank you from the bottom of our hearts. This holiday season, this Christmas, our family is celebrating Thanksgiving. We are full of gratitude beyond what we have ever felt before both to the Lord and to our friends and family. So before I run on and on about this, I’ll just leave you with one final thank you.