For Soren

When I started this blog, almost 1 year ago, I was just trying it out to see if I would actually do it. After a few short months I was well on my way to adding "blogger" to my computer resume. I'm always happy to hear that others enjoy my blog, but really, I don't blog for them. I blog for my kids. I love to scrapbook, but in the past few years, I haven't found the time to do it. So, blogging is a great replacement! I hope to keep doing it for several years and eventually/periodically turn my words/pictures into a book via http://www.blurb.com/

Side: You'll have to excuse the crazy paragraphing in this blog entry. Blogger does NOT like to cooperate when you add photos, and I couldn't fix the random spacing between paragraphs...sorry. It doesn't even let you indent!

With that said, today is the 2 year anniversary of Soren's craniotomy (ie; brain surgery). And I wanted to document it before I forgot the details. I know that most of my blog readers already know the story...so don't feel bad if you don't want to read the novel I'm about to write.

It all started a few days after Soren was born. Adam and I were sitting on the couch watching some late TV and I was playing with Soren's fuzzy little newborn head. I noticed a strange bump on the back of his head that had a strange looking hair follicle with several hairs coming out of it...almost like a tail. I was immediately alarmed and tried not to think the worst...but I couldn't help it. Adam didn't seem too disturbed, but seeing the tears in my eyes prompted him to do a quick Google search. We found a few things, nothing alarming, so I was able to sleep OK that night. It might have been the next day that we had an appointment with the pediatrician, so, of course, we asked about it. Our regular doctor wasn't there, so we asked his replacement. She didn't seem alarmed and said that it was probably just a dermoid cyst. She had another doc come and look at it as well...he said the same. After a few weeks, we saw our doctor for another regular visit. I asked him about the bump as well...he said it was likely nothing and that the worst that could happen would be an infection. So, 3 doctors...same story.

I left the subject alone for a while and wasn't too worried about it. At Soren's regular 4 month visit to the pediatrician, I had decided that I wanted to discuss removal of the "cyst." The bump was right on the part of his head where he laid on it all the time, and I just wanted it out of the way so it didn't even have the chance to be bothersome. The doctor ordered x-rays and referred me to the ONLY pediatric dermatologist in the state; Dr. Kroll at OHSU...just to make sure I had nothing to worry about.

We got in to see Dr. Kroll a couple of weeks later. I don't really recall what he said...but he didn't give me any definite answers. He ordered that we schedule an MRI...again, just to be sure. He didn't know who should be removing this "cyst"...a neurosurgeon, or a cosmetic surgeon.

The MRI was scheduled for a couple of weeks later (mid-March)...Soren was around 5 months old. He needed to be sedated since it would last about 45 minutes. I was nervous. Starting his IV took a long time. They poked and poked and poked and almost gave up! Soren was an angel. He got a bit fussy, so they gave him some sort of narcotic in his nose that made him all goofy and he laughed at everything. It was SO funny! They successfully completed the MRI, so all we had to do was wait.

The next two months were kinda crazy! We sort of put the whole "cyst" drama on the back burner and finished up prepping out house for the market. We wanted to have it for sale by the end of April so we were busy replacing things, fixing things, and decluttering things. We hadn't heard anything from Dr. Kroll's office, so we assumed that everything was OK. I recall calling...but they still hadn't gotten the results. In the first week of April I severely hurt my back, took my first ambulance ride, and ended up bedridden for 3 weeks. After THAT, Adam put the house on the market, and we started our house search in Clatskanie. I think we even put in 2 or 3 offers at that time as well (we thought our house would fly off the market because houses were going like hot cakes in our area). CRAZY! Adam didn't even have a job in the area yet. God was surely watching over us by allowing those offers to be denied. The market was starting to tank and we had no idea what was in store for us in the month of June.

Sometime during all this craziness I think I got a call from Dr. Kroll's office. His intern said that he didn't find anything on the MRI, but that Dr. Kroll wanted us to see Dr. Selden, Head of Pediatric Neurosurgery at OHSU. Again...just to be sure.

After that conversation, I still felt pretty good about the whole thing. I really didn't think that Soren had anything weird going on. I just thought that all the doctors were just covering all the bases. We went to see Dr. Selden sometime at the end of May. He took one look at the bump and said something like... "I know exactly what this is! How on Earth did you find it??" "How did you know to come here?" "This is very rare, and they often go undiagnosed!" Truthfully, I was relieved. Somebody finally had a definite answer. I was beginning to feel like Soren was one of those cases on Discovery Health's Mystery Diagnosis. He told us that Soren had a "Dermoid Sinus"....a rare, non-hereditary birth defect. They only occur down the midline of the skull or spinal cord because it happens when the two halves come together and there is an incomplete separation of systems. Basically, it's skin/hair cells pinched in the skull/brain that can continue to grow (like a tumor) and eventually cause death. The Dr. said that it often goes either undetected or misdiagnosed. I even Googled it and couldn't find ANYthing on it occurring in humans...but in dogs (in my initial search). You have to dig deep to find anything on humans...and even then, some of the information is only located in Dr. Journals that are not available to the public.

Dr. Selden is a busy guy, so he didn't waste any time. He didn't think that the sinus tract went through the skull and on top of the brain, but he wanted to see if there were any skull deformities, so he ordered a CT scan. Within the next couple of days, we took him in ready for another sedation. Fortunately, they were able to do it without it. I can't remember, but I think we might have seen Dr. Selden that same day. He showed us the CT and there was an obvious dent in his skull. He explained a bit about how the surgery would go and we were off.

I wasn't all too worried. It sounded as if they weren't going to have to cut into his skull and that the surgery would be fairly uncomplicated. We took Soren to complete a battery of blood tests and took a quick pre-surgery tour of the Doernbecher facilities. I wasn't expecting the surgery to be scheduled too soon, so I was surprised to get a call from the scheduler within a day or two. Soren was set to have surgery the next week! I was a bit stressed because my family was set to be on the East Coast that week and I had to find a way to juggle Synnove. My mom-in-law had just got a new job and her schedule was fragile...so, we planned for her take Synnove the first night, then Adam would watch her the second night, and I the third.

A couple of days before his surgery, my brother graduated from high school. I was able to fill everyone in on what was to happen, and we got many promises for prayer. My Grandma Q. and Aunt Suzi were very concerned that my parents weren't going to be there, so they told me they would try their best to be there for the surgery. Pastor Jagger said the same. I really didn't feel I needed the support...then again, I didn't really know what I was in for.

Bright and early Monday morning, we headed to the hospital. We thought we would be the first surgery of the morning, but our starving Soren had to wait a bit. He was very good...smiley and friendly. A lady came and took his picture and told us to fill out an "About Me" poster to hang on Soren's room door...for fun. Shortly after that, we said our goodbyes and headed to the waiting room. Grandma, Aunt Suzi, and Pastor were all there. Even Katie (Suzi's daughter) stopped by, as she was working in the phlebotomy lab there. And as the hours drug on, I was extremely grateful for the distraction. As I recall, the surgery was only supposed to last 2-3 hours...so when the 4th hour passed, we all got a little antsy. There weren't any updates through the front desk, and after a while Aunt Suzi was ready to demand some answers. Finally, we got a report that they were finishing up and that the Dr. would be out soon to talk to us.

Dr. Selden came out and called Adam and I back for a chat. He basically apologized for how long the surgery was, saying that he certainly wasn't expecting to have to do "the full meal deal" (his exact words). He then told us that he was completely shocked to find a whole peanut sized mass on the inner brain membrane that should have been visible on the MRI. He was very positive about the whole thing and felt 99.9% confident that he got it all out. We finished our chat and went out to wait for Soren. They brought him right through the waiting room to head down the hall to the PICU. Soren was up, bright-eyed, and looking around. Although, I was taken aback when I saw the horrendous, exposed incision.

Our PICU nurse was in love with Soren...in fact everyone that came in contact with him fell in love with him. Soren maintained his "happy" disposition for the first couple of days. The first night was no fun...as he was quite ill. And since he didn't have anything in his stomach, it was especially heartbreaking. He stayed one night in the PICU, but he almost had to stay longer because the hospital was so full. They eventually found us a room in the children's cancer center.

Soren was connected to so many machines in the PICU, it was really hard to hold him. I was scared to hold him...he seemed so fragile.

I think this video was taken the day after surgery.

Once in a regular hospital room, we felt like we could relax a bit. The room in the cancer ward was especially nice...complete with a computer and Internet access. We were grateful to them for taking us in, as they don't like to have to care for non-cancer patients. I was surprised over and over during our long hospital experience to get compliments on how well we cared for our little boy and how we made their job so much easier. I didn't feel like I was doing hardly ANYthing! The nurses at Doernbecher are absolutely fabulous!

Anyway, I was really sad to see Adam go home that second night. Unlike being in the PICU, the regular hospital rooms are a bit lonely. Before Adam left, Ann came for a visit! We were grateful for all of our visitors! Shannon, Faith, Katie, Elise...Thank you! Anyway, being alone the second night was torturous. Soren still wasn't well and wasn't eating much more than Pedialyte. All through the night, in a semi-conscious state, it seemed as if he was trying to push (having a BM) and then it turned into grotesque dry heaves. Over and over it would happen. I kept asking the nurse if we could give him a suppository laxative...but she said "we aren't supposed to" (I think that rule was exclusive to cancer patients). It wasn't until several hours later that another nurse came in to help. She said "why don't you give him a suppository laxative?" The nurse told her the same thing she said to me...so she decided to persuade the poop our herself. I won't explain what she did...but it worked! I thought the heaving would stop after that...but it didn't. I was a nervous wreck! I thought that the sickness would have worn off after a day...cause I thought it was a reaction to anesthesia. Nobody had any answers. I didn't find out till later that the nausea was coming from the swelling of the brain...making him "seasick."

I didn't sleep a wink that night, and Soren was miserable. I needed distraction so I struck up a conversation with the nurse...she was younger than me! After a while she had to get back to work. A bit later, I propped the door open and asked the nurse to keep a close eye while I took a walk to clear my thoughts a bit. I tried not to call Adam till a reasonable hour. I explained the horrid night and couldn't wait for him to come see us.

Later, he brought Synnove. Of course, she was in carpenter jeans, and Carhartt sweatshirt, and her hair was done the best he could manage. Synnove was very apprehensive (only 2 at the time) and didn't say much. This, and the time before and after, was especially hard for Synnove. I think the picture below was taken while Shannon was visiting and just a few short minutes before he threw up all over Adam. Lovely.

Shortly after they came, I took Synnove home with me. Adam is SO good with the kids and I had absolutely no doubt that Soren would be well cared for. If not for that, I couldn't have gone home so easily. After two nights of no sleep, I was happy to curl up in my bed for some undisturbed sleep. That night was the 1st night since Soren's birth that I got to sleep all the way through!

The next day, Synnove and I headed back to the hospital to pick everyone up. Hooray! We had made it through, and were going home! That morning, Adam had gotten Soren to eat baby food and formula, and he managed to keep it down. But...it came up again on the way home. Soren was such a trooper...he really was good considering the circumstances. This photo was taken in the parking lot...

The night we came home, we had some people coming to look at our house. We were selling it ourselves, so we had to do all the dirty work. The people were very nice, loved the house, and stayed to talk to Adam for quite some time. They had a little girl that was quite friendly and wanted to play with Synnove (she must have been 4-5). Actually, the girl was a bit too friendly and made herself at home. She really was a nice little girl, but I could tell that Soren was getting a bit uncomfortable. I certainly didn't want him throwing up in front of future buyers...so I had to sort of sneak upstairs and "shew" the girl away (I know...sounds terrible). My prediction was right, and Soren made his mess upstairs...phew!

The next few days were OK, but still not great. I became a nag at the pediatric neurosurgery department...calling all the time...wondering why Soren didn't seem to be getting any better. They were always very nice, and tried to reassure me that what he was experiencing was normal. I remember that Saturday (about 5+days after surgery) was the first day he didn't throw up. My parents got back from their trip and mom came for a quick visit. She and Elise were busy preparing for the opening of Elise's coffee shop in a month. Anyway, when she came, she noticed how skinny he was and how pale he still was. I was still optimistic...hoping that would all pass once he started eating regularly again. Here he is eating strawberries from the garden...

On the night of the 12th (about 1 week post-surgery), I put Soren down for a nap. He woke a bit later and threw up a little bit. Gosh darn nit! I found it odd, and immediately told Adam. Of course, he was thinking clearly, and asked if he had a temperature. I took it, and he did have a small fever. I immediately called neurosurgery...and some on-call guy basically said it was no big deal and that if it went up we should go to the hospital. No big deal!? The kid just had brain surgery! We checked his temp again a short time later and it was higher. We immediately called Adam's mom to come over and took Soren to Tuality Hospital in Hillsboro (5 minutes from our house).

The ER wasn't busy and took us back pretty quickly. We weren't there very long when they told us that Dr. Selden wanted us back at OHSU and would provide an ambulance if needed. We opted no, and headed straight there. It was late at night and the ER at OHSU was...interesting. It took them a bit to get us in, and by that time Soren's fever was getting worse. We were put into our own room with a TV. We were literally there all night until morning.

The ER was hell for Soren...and for Adam and I. They thought he might have a urinary tract infection, so they stuck a tube up his *ahem* They tried starting an IV...over and over and over again. It was complete torture. Finally, they put one in his head with fluids and antibiotics. THEN, they decided to do a spinal tap to see if his spinal fluid was infected. They thought it would be best for us to leave the room while they did that. We heard his screams through the glass door. All during this time, Soren's fever had made him lethargic. All he did was sleep...thankfully. He woke in the morning and watched Sesame Street with a smile on his face.

Obviously, his fever was down. We were just waiting on the cultures taken from his spinal fluid. Turns out, they did find a small infection in his urine...but they didn't feel that would have caused his fever. That morning, they admitted him at Doernbecher.

Patty needed to get to work, so my mom came from the coast to pick up Synnove. We didn't know how long we were going to be staying at the hospital...but it seemed as if things were looking up. Soren was happy and we were just waiting for the cultures and for Dr. Selden to evaluate him. Patty came during her lunch break. She was a welcome sight, as I was in need of some moral support. Below is Patty and Soren having a little nap...the bandage around his head is holding his IV in place.

While she was there, the Dr. came and felt that Soren was fine and they were prepping the discharge papers. While we were left to wait, Soren had a BM. As he pushed, fluid started dripping like a leaky faucet out of his inscision. Uhh...emergency! The nurse came in (awesome nurse that was with us for most of the rest of our hospital stay) and tried to be calm. She immediately called back Dr. Selden. As I recall, he came within the hour, looked at Soren, and cleared his evening schedule for emergency surgery. It was at that point that I didn't feel I could hold it together any longer.

Patty called her work and stayed with us until he got out of surgery that night. And we were thankful to see Grandma and Grandpa Thompson waiting for us in the waiting room after we sent Soren off. God was not only watching over our little boy, but watching over us as well. We were in great need of company that night.

I really don't remember how long the surgery lasted. All I know is that the Dr. went back in to find that some of the stitches around where he patched a hole in the "dura membrane" were deteriorating and that's where the leak came from. To this day, I feel that all the pressure on his head/brain from being sick for so many days was what caused the deterioration. That's part of the reason why I was so frightened for what the next few days would bring. I still was made to believe that a lot of his initial sickness came from the anesthesia and I didn't want to have to go through it all again. What if Soren had to have another surgery??

When Soren came out of surgery, he was quite cranky. He was officially traumatized, and feared anyone in scrubs. When we were called in to see him, I took a quick gander to assure that he was OK, and then sat back and cried. I tried to pray...but I couldn't even concentrate. Patty sat next to me for my own comfort while we watched the recovery team monitor his every move. Adam stayed near Soren.

That night, in the PICU, things went very well. Soren didn't get sick. I was baffled...so I asked the nurse. She said that people (including children) don't get sick off the anesthesia unless they are allergic. I guess all of his sickness was from brain swelling. And because the 2nd surgery didn't require the Dr. to go all the way to the brain, Soren was in the clear! He was drinking formula by early the next morning!

We spent the next week in the hospital. Intel was very flexible and Adam was able to do some work on his computer from the hospital room (ethernet). Synnove was in good hands at my parent's house. I think she even got to help paint the inside of Elise's new coffee shop! Soren was hooked up to some intense antibiotics 4 times a day on a pump for 1 hour at a time. Somehow we filled our days with things to do...mostly eating and watching TV. I recall watching The Lion the Witch and the Wardrobe over and over, and America's Got Talent. I did some laundry periodically and visited with parents of cancer patients while I waited for a washer to open up. I praised God for the health of my baby...that he didn't have to go through what their kids had to go through. We even listened to a little concert down in the lobby after Soren got his Picc line (free from conventional IV).

Here's a bunch of photos from that week...

I don't remember many visitors. Elise came when she was visiting a friend from school, and Grandma Q. and Suzi came and brought us a basket of munchies!

Katie...making the blood draw rounds as an intern...just happened to be training at Doernbecher on a day that Soren needed a poke. He's not too happy.

Happy boy...after the swelling in his face had gone down.

All of this happened before he learned to crawl.

He got some ballons from Grandma Patty

Apple juice

It was hard trying to keep him happy confined to our room. He loved the few short jaunts we were able to take outside the door.

Leaving...for good this time!

Before we left the hospital, we were told that Soren did have a small infection in his spinal fluid. We had to continue to give him IV antibiotics at home for the next 2-3 weeks on the same schedule using his new Picc line (an internal line that goes up the arm to the heart). That whole time was arduous and nerve wracking. The evening we came home, the home care people came to give us a training session on how to be sterile, how to put the pump on, etc. After 2 days, we were pros. We had to administer the stuff for an hour every six hours on the dot. Most times his line would get kinked in his shoulder, and we would have to hold his arm up the entire time. He rarely complained. Adam and I couldn't really take turns doing the night shift cause he had to work in the morning. I was exhausted.

After the 2nd surgery, his inscision protruded from his head quite a bit because they wanted to make sure it was good and tight. Dr. Selden assured me it would eventually go flat.

My parents kept Synnove for a few more days after we got home to give us some adjustment time with Soren. She was still very unsure about Soren's ordeal. She was a welcome sight when they brought her back!

Because of his Picc line, we could only give him sponge baths...he hated them.

In this pic, Soren's pump is connected and sitting in the back pouch of the backpack.

Soren got his Picc line out on July 6th...just over a month after the whole thing started. We went on to have a crazy summer trying to sell our house, etc. He had a follow-up MRI on the Friday before Labor Day (1st day of camping trip). I took him myself, while Adam stayed back and packed up the Explorer to head off to Naselle for camping. During sedation, Soren kept waking up and waving at the nurses/anesthesiologists. They were baffled and amused by his strange resistence to the drugs. They had to re-drug him twice...so he was pretty out of it for the rest of the day. His MRI came back clear.

Through all of this, I have learned--yet again--that God is in control. No matter what happens, he knows our pain and can guide us through any obstacle life has to offer. All the glory belongs to Him!! Without Him, I might have never decided to have his "harmless cysct" removed, and I could have lost my baby by the time he was 3 years old.

Every time I hear the first verse of that new song "Always" by Building 429 I get a lump in my throat. Especially the part where the verse says:

"He would have been 3 today

I miss his smile

I miss his face..."

"But I believe always, always

our Savior never fails..."

Click HERE to hear the song.


Here's Soren's scar today. I couldn't get him to sit still so it's a bit blurry. It's white and completely flat.

Soren has another MRI coming up in September. They just want to make sure that they got everything out and that nothing has grown back. Keep him in your prayers, and I'll post an update when the time comes. Thanks again and again to all of our friends and family who gave us loads of prayers and support during the entire ordeal.

I love you so, so much my Sweet Guy.

~Mom