Putting Life in Perspective

I am currently in the process of rediscovering my Christmas Spirit.

It officially went on a hiatus, pretty much starting about 12:15 on Monday afternoon with our follw up visit to our Pediatrician. Right now I will say everyone is ok - we had a rough spell, but we are getting through it and are better than ever.

This week has put so many things in focus for me, for my family, for the people that touch our loves. You know who you are! Hell, you are here, reading these words. This will be a loooonnnggg post. It will be long because I have a lot to say about what has happened in the last week. Yes, I know this is a dramatic build up, but it can't be helped because I am trying to figure out my own way through this and being able to stream out consciousness here is a form of processing.

Our doctor, and then our pediatrician have been concerned about Brandon's head growth (circumference) over the last several weeks. His head was growing at an exponential rate (off of the growth charts for his age and his percentile), so we were sent to Children's Hospital on Tuesday for an ultrasound. The US showed that Brandon has enlarged ventricles in the brain (the part that carries the cerebral/spinal fluid) which was creating pressure on his brain and since the bones hadn't fused yet, allowing his head to expand quickly to make room. After the US we were scheduled for an MRI at Children's on Wednesday morning at 9:30am and then set up to meet with the Neurosurgeons about possible treatment if indeed there were any blockages causing the buildup or if it was hydrocephalus.

It turns out that Brandon was indeed diagnosed with hydrocephalus and was put on the wait list to get in for surgery ASAP. We do not know what caused this, it could have been viral or one of many other causes. What I do know is that we caught it really early and there was no brain damage which has been confirmed by how Brandon was behaving and hitting milestones prior to this diagnosis, and now, a few days after, how he hasn't changed and is still interacting and behaving as before. What happens to manage hydrocephalus and the abnormal CSF build up is to install a shunt in to one of the ventricles in the brain and a tube is placed down through the body in to the belly cavity to have the excess fluid drain in to and be absorbed by the body.

We had to wait to get a room, which was surreal. We took turns making a few phone calls, going to the bathroom, watching Brandon, and just alternating between feel numb, shellshocked, scared shitless, dumbfounded, unbelieving, questioning, back to being scared shitless, and just coping. It made me so glad I had Ken with me and none of us had to walk this path alone. Once we got a room (about 3:30) then we had to wait for surgery. Our neurosurgeon figured we would get in about 8pm but since there was a degree of uncertainty about it, we couldn't feed Brandon, so the poor guy hadn't eaten since 6:30 am since he had to be sedated for the MRI. He is a total trooper and all in all was pretty awesome all things considered. It was Ken and I that seemed to take turns being the strong one while the other had a few moments where we crumpled from the incredulity of it all. Family came by to be with us during visiting hours (until 8pm) and I know I was a complete Momma Bear, it was really hard to let him go to anyone, I just wanted to hold him tight and protect him from everything and knew that I couldn't help him with what was going to happen beyond being there and giving whatever comforts my body and heart could give. That was the hardest part for Ken and I, the limitations of what we could do. Amazing how much love you can possess in your heart for your own.

We went in for surgery about 9:30, and come out after 11pm. This was time that dragged on and on. We went for a walk in the rain, and the coldness helped. We made a few more phone calls, pretty much to our parents just to connect to them and keep them in the loop. Then it was more hurry up and wait. This was worse than waiting for Brandon to come out of the sedation for the MRI I was so scared at what changes there could be after this surgery. So many unknowns. Brandon's recovery was ok - he was over tired and really hungry so it took a while to calm him down once he was awake. Truth be told, it was terrifying with all the machines going ping, and the tubes, and Brandon crying so hard it was hard to calm him down. I ended up getting wheeled in the stretcher with him back to our room. When the chips are down, I was relieved to hear his cries and see how lusty and strong he was.

This is a pretty routine procedure and the doc was happy with how things went. The surgery itself only took 40 minutes - WTF? I have had root canals take longer than this!!! I say routine because it apparently happens in 1 out of every 500 births, so this is not a rare condition (rare to us!!). There are over 180 causes of hydrocephalus, and since we caught it so early, Brandon will live a normal life so we have been assured many times.

I was able to stay the night with him on Wednesday while Ken had to go home (hospital only allows one parent to stay). It has been really tough, and there were a few scary moments Wednesday night because we had to wake Brandon up every hour and check his vital stats for 6 hours. I didn't sleep much, but I was so grateful we didn't end up having to share the room and I could sleep with Brandon in the hospital bed. It took several hours for the anaesthetic to wear off, and in the morning, he had a really good crying jaunt that got all the machines going, me going, had the nurse in, freaked me out so bad my legs were weak. Thankfully Ken arrived shortly thereafter on Thursday morning. The doc wanted to check in on us at the end of the day, and would make the decision whether or not to discharge us at that point.

The shunt is for life, but it will not impact the quality or duration of his life. He can still play sports, and it won't affect his mental abilities. We were dischared on Thursday night to come home. It felt so strange how significantly our lives had changed over the last 4 days. Was it only 4 days? The nurses and doctors were amazing, and in a time where you hear a lot of negatives about our health care, we couldn't have asked for a speedier series of events, and we felt confident that we got the best of what we needed and will receive great follow up.

He is just like before - smiling, sleeping, eating, interacting as he always has, clutching objects, recognizing people, and being himself much to our relief. The bandages covering the incisions will come off tomorrow, and on Christmas we are just going to take our visiting a little slower and more low key. This could be more for us because we haven't really slept like normal this week. Everything happened really fast and our care has been amazing. For such craziness, things are evening out and I am slowly getting less uptight about everything. There are times in the last few days I was/am so aware that I have been walking an emotional tightrope and I have been really trying not to be a wanker at times because I am so wound up. It is hard to relax, you half feel like you are in a fog of unreality because life does move on, and you move in to acceptance, and you do what you have to do, and get'er done.

So all in all we caught this really quickly, the staff at Children's was awesome, we are both shaken but well, and Brandon is already on the road to recovery.

It has been mind blowing because the process more or less started with our PED appointment on Monday, and his call to neurosurgeons here to get the ball rolling. Our pediatrician was on the phone to Chrildren's while we were actually in the original US and had a call in to the neurosurgeon so he knew what to expect and to make sure there was as little hurry up and wait as possible, nothing short of a miracle this time of the year! We are very grateful for how caring our doctors have been to get this dealt with before any of us could even breath and fully come to terms with it. Almost a good thing so we didn't have to worry about it for weeks on end and who knows what impact it would have had.

Our amazing guy - Thursday night when we got home. The pinkish-purple tint on his head is the antibacterial wash that they apply to the area where they have to make incisions. Brandon has one incision site on the left side of his head where the shunt was placed, and then a small incision to the left of his belly button where the brought the drainage tube through. Both are healing really well and the bandages will come off later on today.


Ken considers this the "does that bandage make my head look big?" picture... as you can see, not even a day out of surgery and we got smiles.

Friday is a blur. Saturday was not so much of a blur, more moments that brought more tears to our eyes because Brandon was just Brandon - full of smiles, and laughs, and cranky moments when he needed to sleep, and full of beans like any boy his age.

For us, this year, our Christmas was put in to perspective. We have a healthy family and our son is recovering. We caught what was wrong with him really quickly and these events are already moving in to the past and we are preparing for the future, as crazy and unknown it continues to be. We are surrounded by love, and that was reinforced by our family and friends reaching out to us and keeping us afloat even if it was just with words, prayers, positive thoughts, hugs, and just old fashioned love, whether in person, phone calls, emails, messages, whatever. That is what it is all about. The rest is just a bonus.