When I woke up this morning I was raring to spend the day lounging about the house with my family and avoiding the outside world. Of course today was neurosurgeon day and I really did not want to travel...and the last couple of days have been decent...so I did not want my bubble to burst as a result of any sort of bad news. Sadly, reality does not care what you want or do not want...it demands that you react on cue and be the responsible adult...so we loaded Owen and Brendan up in the car and began our journey. Brendan was dropped off at Grandma Ahlers because we were fearful of his mood being penned up in a hospital once again. Of course, he was also ticked about being dropped off at his Grandma's because the separation anxiety has failed to subside in the slightest way.
After dropping Brendan off we headed down to Madison. It was refreshing to listen to the music on my ipod instead of the Backyardigans and their mind numbing little ditties that seem to be on repeat every time Mr. Brendan is in the car. We decided head down University Avenue to get to the Childrens Hospital and that was a bad idea because the road construction was a major pain and it took forever to get to where we were going. By the time we got to the hospital exit...it was late enough that we could not go somewhere for lunch and make our appointment so we were going to have to eat at the UW cafeteria. I was not completely disappointed because I have grown a taste for hospital food and I was curious to see if UW's cafeteria food would be as good as Meriter. Sad yes...but you when you make a career out of spending time at medical facilities...you get your kicks wherever they may become available.
As we rounded the front entry of the hospital...there was a bronzed statue of what I assume was supposed to be a family...it was kind of creepy and I was in a weird state because we were entering a children's hospital (somewhere I never felt I would ever have to go to) and I was anxious...not just to be going to the hospital but to have to conquer the parking ramp ahead of me and I am not a fan of parking ramps. This particular ramp was awful. It went down instead of up...was very poorly marked as to which direction you needed to go...and had sections that looked like they ended only to see...SURPRISE! You could proceed down this little pathway. For someone who does not enjoy the parking process...the complexity of it all was unsettling and I wanted to get this appointment over with.
Once we were parked...we wandered aimlessly through the poorly marked underground parking area only to stumble upon the elevator entrance. We loaded up on the elevator and went up to the main lobby floor. The lobby area did not look like a hospital. It looked like something out of Alice in Wonderland...or Willy Wonka and the Chocolate Factory. It was painted in pastel colors and had portions that looked like city streets. There was a cow sculpture that was modeled into the shape of a train. It was a visual overload and what I would believe an acid trip in the 70's would have looked like. I needed to use the restroom which once again had a large green door with a push area...but a door handle low to the floor (I am assuming at a child's height) that you had to reach down and use to get in the bathroom. I don't like public restrooms with door handles...so once again, I was very displeased.
Next we had enough time to kill so we headed over to the actual UW in order to get some lunch. We followed the signs to the cafeteria only to end up in the Atrium waiting for an elevator. As we waited...I realized the last time I waited at this elevator I was with my Gram (who passed away over a year ago of lung Cancer) to go to one of her appointments. I looked down the hallway and noticed the sign to radiology and as I broadened my perspective...I could actually see my Gram scuffling down the hallway in her little salmon colored pant suit...her hair all done up and her eye brows drawn on just right. A heaviness settled in my chest and a little tinge of sadness sparked through my body and DING the elevator arrived to take us to the cafeteria.
Focused back on the prospect of a little lunch, we proceeded to board the elevator. The cafeteria was fantastic and I am afraid it was much better than Meriter's. It was very swank (I just wanted to use that word). It had been completely remodeled since the last time I was there. It had a little area to purchase subs, a large area to make your own salad, a little bakery to purchase baked goods. There was a section of Asian foods and a section for comfort foods. There were a variety of drinks from cappuccinos to energy drinks. All different brands. There were tons of different desserts to choose from...I think I gained a few pounds just thinking about them. I was impressed...but we settled on some fried mushrooms and a barbecued pulled pork sandwich. Both were very good and satisfying. I wanted dessert...but I was not the least bit hungry by the time I finished what we had...and really I need to put down the fork and go for a run. Unfortunately, we have many more hospital trips in our future...so I will be able to schedule a date with a piece of Peanut Butter Pie real soon.
After lunch we headed up to the 3rd floor of the childrens hospital for Owen's appointment. Once again...there was different decor...but it was very busy, brightly colored and for me, frightening. They had little rooms that you needed to go into to register...so while April did that, I sat on a couch in the lobby and cased the place out. There was a large fish aquarium farther down the way that I thought Brendan would be interested in. I saw a painting of a man and an arrow...must be a mens restroom. Next to that, a painting of a woman and an arrow...must be a womens restroom. Good to know. Then I saw a picture of a dog and an arrow pointing to the doors. Hmmmm....are their that many sick children with dogs needed to assist them that they have their own little place to keep them during their appointments? They could not possibly have an area designated to letting the dogs go to the bathroom...that would be stupid. But then...it is all concrete all around the hospital and I suppose if they need to go they need to go and it would be logical to have an area for them to be able to urinate. Hmmmm....Before I could embarrass myself with anymore ridiculous pondering of the concept...April reappeared and told me to follow her to the waiting area we needed to be in.
By the time we were walking towards that area...Owen had started to fuss and all I was thinking about was getting seated so I could give him some bottle...so I did not look around at anything else. I started feeding him and he was ravenous...and just a few sucks into the bottle, we were already being summoned to head to the examination room. We followed this stout troll like lady into one of the rooms. She looked to be in her late 40's/early 50's with short bobbed hair and a sharp demeanor. I did not think she was very personable. She asked that we allow her to weigh Owen and when April commented he probably would not need to be undressed...she snapped...yes he does! So she and April worked on undressing him and weighing him. He gained again...woo hoo! Next thing you know we were being whisked off to another exam room for no apparent reason. Here the Troll Nurse measured the circumference of Owen's head to find it had increased 1 cm. After the typical pre-exam question and answer session she said the doctor would be in shortly and left. The room was painted in an awful pepto-bismol pink. There was a barn and a bale of hay painted on the ceiling. The doctor's chair as well as the benches around the room were cow print. A little child has clearly had fun once with the doctor's chair since it was doodled on with black pen. As we waited, I wondered how children would find this soothing.
It wasn't long before the neurosurgeon arrived. He was the same older gentleman that we had met at Meriter. He was followed into the room by a young male medical student and a young Asian female medical student. The surgeon introduced himself as if we had never met him before (and I am pretty positive he did not remember we had) which once again made things more surreal and unnerving....so because of this (and the fact he had creepy long pauses between his statements over the course of the appointment) I will refer to the neurosurgeon (not to be confused with the neurologist Dr.Elmo) as Gramps Creeper...since we was a creepy Grandpa type that was friendly but odd. Anyway...Gramps Creeper and his staff introduced themselves and proceeded to surround April, Owen and myself to begin the appointment. Gramps would ask questions and we would answer...this would be followed by bouts of silence as he read the computer screen in front of him. He had some trouble finding the scans of Owen's to review and the disorganization of the meeting made things awkward. He wrote his notes with a calligraphy pen and I chose to listen to the scratching of this pen against the paper as the doctor's mumbled to one another.
Eventually a little bit of information was divulged about Owen's current state. Only about 1/3 of the bleed remains in his brain at this time. The area where the blood has been has now filled with spinal fluid and so hydrocephalus (as predicted) has set in. Gramps Creeper said that a shunt would need to be put in but they would hold off as long as they could because he would like the blood to be gone before doing the procedure. Doing it now would increase the risk of infection as well as a clogging of the shunt (which could happen as a result of the dried blood material in the brain). He asked that we return in 2 weeks (and attend all of our other scheduled appointments) so he could evaluate things again at this time. If Owen's head were to swell 2 cm or more in a week...he wanted him back sooner. I asked about the cysts in his head and he reviewed the scan again and pointed them out (I knew where they were...I just wanted to know the consequence of them). He reiterated that they were caused by a dissolving of tissue where the bleed had been inside the brain matter and said that typically cysts like those did not increase in size or cause any issue. April asked if there were long term affects because of the cysts or bleed and he told us that the prognosis for Owen's case is very vast. The possibilities are so endless because they really have no idea what the result of all of this will be until time shows us what they are. As April and I discussed later....it is frustrating to have no real prognosis...but on the other hand...it means the possibility of something great happening is just as possible as something bad. So we continue to hope for the best. Gramps Creeper drew a diagram showing us how and where a shunt would be inserted. He said if it was done soon...it may need to be an external shunt for a couple of days until they were confident dried blood material would not clog it and then it would be run internally. A shunt is permanent. The procedure itself would take about 45 minutes and runs about a 7% risk of something going awry. Without it...the hydrocephalus would not go away on its own and the swelling would continue. This means that a surgery is in our future along with more nights in the hospital and probably at the Ronald McDonald house. The news was not great but not devastating. Gramps Creeper then bid us adieu and we dressed Owen and headed back out in the lobby to schedule our next appointment.
Again...April went to schedule the appointment and I sat on a couch with Owen looking around. Straight ahead of me was a men's restroom. Next were a set of double doors with a sign in front of it with a cat and an arrow pointing towards the door. A little ways away was doors with a barn painted on a sign and the arrow. It was at this point I realized how fried my brain has become and a grin streamed across my face. They did not have an area for dogs....those signs were indicators for children to know what section of the facility they were in and to make it easily identifiable to them so they could get where they were going. We went into the doors with the barn sign and ended up in a room with a barn on the ceiling. DUH! Of course, my stupidity could have been my own little secret...but now I have shared it with all of you!
We left the hospital still feeling optimistic which has kind of been the theme this week. Owen has continued to eat well and the spits have been few and far between. The concept of brain surgery is scary....but a bridge we will need to cross when we come to it. I guess this truly is an adventure and one that we will tackle one challenge at a time.
I would like to end this blog with a couple Brendan stories since he was not part of this post so far and he is such an enjoyable little monster. I don't know if it is in his water or what...but while his vocabulary is vast...he spices it up every once in a while with an English accent. I am not quite sure where it came from...but it is very prominent at times and quite humorous. None of his cartoons have characters that speak with English accents...so I don't get it.
Brendan is also becoming even more mischievous. Owen has a large tub of Vaseline that we use to put on his gauze for his circumcision area...and Brendan has stolen this tub numerous times to see how much Vaseline he can ingest before we catch him. Disturbing? Yes! He has discovered he can climb and tonight while playing in his room...he brought out a package of little kid crayons that I swore I had hidden from him in his crib he never uses. When I refused to open them for him...he disappeared. A few minutes later he was crying and April went to check on him. He had scaled the side of his crib (which is what he must have done before) and was leaned over the railing of the crib with his hands on the mattress and his legs dangling over the side. The weight distribution must have been wrong and he was just stuck. He was crying because he needed to be saved. He has tried to sneak out the back door numerous times recently and has been known to sneak a crayon or two in another room for a snack. I think we may have a bit of a handful with Mr. Brendan and a possible bad influence on his baby brother Owen. I'll keep you posted on that too!
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