Left Field

We took Lincoln in for a regular check up with his neurosurgeon for his shunt to be examined.  Scott and I were so extremely confident that we would receive the news that it was working perfectly.  We even got a little cocky and mentioned to each other "I bet he doesn't even need it all anymore!" Little did we know what exactly was going on inside of his little head.
After they had done the CT scan we met back in the exam room.  First it was a resident whom greeted us and asked a few general questions.  The questions seemed a little random, but nothing too alarming.  Then our acting neurosurgeon came in and informed us his existing shunt was working perfectly.  He said the ventricles looked great and there was no concern, that is for that portion of his brain.  He then pulled up the CT scan image and he showed us that his fourth ventricle, which is the lower ventricle by the brain stem, was looking very concerning.  He said that it was of a very abnormal size with a large amount of spinal fluid build up and so much so that it was pressing into his brain stem.  He said that it would be very important to have this taken care of right away with surgery and the addition of another shunt.  We were also informed that if it weren't to happen, there could be some very devastating things that may happen.  And by choosing to do so, we would probably see some vast improvements.  Scott and I were awestruck.  We couldn't believe the words we were hearing.  It was a little hard to process.  I was bawling and couldn't imagine that my little guy was going to have to go in for another surgery, yet again.  We knew it was for the best.  He offered us two surgery dates, that of one the next week or the next day.  We chose the next day.  The doctor tried to cheer us up and say "I wouldn't be surprised if you saw huge motor skill improvements by next week!"  We were very hopeful.
We showed up to PCMC early the next morning.  Lincoln went in for surgery and everything went very smoothly.  The protocol is to have the patient stay overnight and if all is well, let them go home the next day.  Of course, you know we'll never be in the 'typical category.'  Never have beenb never will I guess.  They did another CT scan the next day to make sure everything was in place and the size of his ventricles were on track.  They were a little taken aback when not only his fourth ventricle was still about the same size, but now his upper ventricles had become enlarged.  They decided to keep us another night and do another scan in the morning.  He seemed to be recovering about as well as you would expect I guess, considering that it's brain surgery.  We were able to manage his pain and his little personality was coming out again.  The following day the results of another scan would show us that there was little to no change.  They decided to send us home anyway because he seemed to be acting fine.

 We arrived home in the early afternoon and all seemed well.  Lincoln played with his siblings and then laid down for an hour nap.  Right after he woke up all hell broke loose.  All the signs and symptoms of a shunt malfunction were manifesting themselves.  He was throwing up and acted like he was in pain.  We were devastated this was happening.  We had hoped that it was just a very temporary thing.  We thought we could just buy time and see what happened in the morning.  By the morning he had thrown up multiple times and we knew it was apparent he needed to go back in.  We had spoken with the neurosurgeon on call and he informed us it was best to bring him back in.
We went straight to the ER at PCMC.  They did another scan and decided another surgery was necessary.  We were a bit freaked out and I just didn't know how my baby was going to be able to endure another one of these tough surgeries considering he didn't even really have the chance to recover from the first one.  They decided that his upper shunt was blocked and not working.  Somehow the addition of the second shunt had thrown off the dynamics of the fluid pressure and balance, which in turn, made it stop working.
I was sick when I came to greet him in recovery after his second surgery.  It had been almost three and a half years since I had seen him with similar scars that had overtaken his fragile little skin on his tiny little head.  It was all I could do to battle back the tears.  I was supposed to be there to comfort him, when in fact, I needed someone there to comfort me.  I pulled it together as he started to wake from his groggy little slumber.  I wanted to just die when I saw him reach up and feel his wounds for the first time.  I could only imagine what his little perfect mind was thinking as his fingers went over each bump and suture. 
Back to the room we went and hopefully just one more night at this hospital was what we were aiming for.  Both Scott and I slept in the room with him both stays now.  Scott took the little couch that folded out to a bed and I slept with my boy, wanting to make sure I was there for his every need.  We stayed only one night this time.  After the scan the next morning it appeared that everything had actually seemed the same again, with little to no change to his ventricles.  They felt comfortable in sending us home.

 

This time we were able to stay home for two nights.  The first night everything went smoothly, but as the second night approached, he threw up again.  Not only was he throwing up, but he was in extreme pain.  We had to lay him flat and he was constantly grabbing for his head in agony and pain.  Along with that, he couldn't open his eyes.  We were going crazy thinking this was happening again.  I just couldn't fathom if he had to have another surgery.  I didn't think his little body or brain could even handle it.  We rushed him back up to the ER and waited around for quite a while before they decided to admit us.  They ended up doing a tap on his shunt.  They placed a needle in the 'reservoir' portion and pulled off some of the spinal fluid.  This would show them a few things.  Depending on how fast the fluid came out would determine how much pressure he had in his ventricles.  It came out at a nice steady stream.  That would indicate there was no pressure.  Slowly after the tap had taken place, our little guy was no longer complaining of pain and started to open his eyes again.  The scan showed this time though that there really was no change from the last one.  They got us settled in and Lincoln comfortable.
He really had the doctors scratching their heads.  His neurosurgeon let us know a few things.  First, that Lincoln's case of hydrocephalus was just about as complex it could get (great to know that gives you the warm fuzzies) and second, that just about half the neurosurgeon's across northern America now knew about Lincoln.

 As a few days passed, he was again unable to open his eyes.  They decided to do another tap and at the same time chose to adjust the flow at which his shunt was draining the spinal fluid so that more was coming out at once.  This was an interesting process.  We actually didn't know they had put a programmable shunt in this time.  They have a little hand-held machine that is magnetic.  They place it above the shunt and when it's in the proper place it starts to beep.  There are setting that allow them to set it at the level that is needed.  Not long after the tap and adjustment to his shunt, his eyes were able to open again.

They really felt like they didn't want to do another surgery and we were completely in agreement with them.  Dr. Riva-Cambrin had told us of an unorthodox treatment that some believed was an "old wives' tale," but they had tried on a few patients and swear by it to this day that it works.  The treatment would be to wrap an ace bandage around his neck.  Odd you say, it sure was and many of the residents were rolling their eyes thinking it was just that....a funny "old wives' tale."  The theory is that if you wrap the ace bandage around the neck, not too tight that it chokes, but just enough so you can get a finger in between the neck and bandage, that it decreases the blood flow to the brain which in turn causes the ventricles to constrict.  Lincoln wasn't very fond of this idea, but we were up for anything considering the other options. 
As a few days passed they took him in for another scan.  The results would show that, in fact, the wrap was helping!  It had totally taken many of us by surprise, but we were so happy for this new news!  We had come in on a Monday and with it being Friday, we were now hopeful of going home.  Everything was looking good and he was even getting up and running around with his walker a little.  His appetite was back and we felt so confident that our little guy was here to stay.  They even gave us permission for discharge.

As we were waiting for Daddy to come back from running errands so he could take us home, Lincoln started to throw up again.  Our minds were boggled.  What the heck?!  "Sorry....you're not going home now" were the words that rang in my ears.  I tried to think of every possible reason why this was happening again!!!  Maybe he just ate too much....maybe he was up moving around too much..... They actually agreed.  They decided to send us home anyway.  As we gathering up our stuff, he started to throw up again.  Alright, it's best we stay.  He had thrown up once during the early morning hours the next day, but it wasn't very much.  Aside from the throwing up, he really acted pretty normal.  He seemed fine and he was really giving the doctors a run for their money.
 

This stint we had stayed from Monday to Saturday and we were just itching to get home.  With the okay from the doctors again, and as they repeated multiple times we're okay with it if you feel comfortable with it, they gave us the go ahead for discharge.  We were all for it.  We brought him home with no episodes of vomiting and had a pretty good night too.  He threw up on occasion at random times over the next few days.  After going in for a follow up, a few days after discharge, the doctor told us that it would make sense that he was throwing up, as long as there were no other symptoms of malfunction that accompanied it.  Generally a lot of motion is what would tend to trigger it and at other times, there was no trigger at all.  His brain was getting used to the new environment and pressure.
This process has been a slow one for the healing aspect.  I would have to say it has been within the last couple of days that Lincoln is back to himself, one hundred percent.  Man our faith sure has been tested over the last 5 and a half years or so.  I feel like we've done pretty well though, if I do say so myself.  Somehow we have been able to pull through it and come out of it smiling.  That's what life is about though, you know.....  facing some of the toughest trials you never dreamed would be a part of what you had in mind for a 'picture perfect' life.  It's about just that....handling it.  It may not be graceful, you may feel like you're falling apart at the seams and a huge fat mess to the outside world while in the midst of it, but if you can just keep it together, keep on chugging, never give up and always keep a hold, you'll come out smiling, knowing you survived a very pain staking test.  You can give yourself a pat on the back and hope you'll handle and live through the next one.
There were many prayers and fasts offered on the behalf of our little warrior and our family.  Thank you so much!  We know that Heavenly Father hears and answers our prayers.  This isn't the first time, on the account of Lincoln, we've been able to see that that is true.  Lincoln is our little miracle, I don't know why he thinks he has to prove that over and over again! ;)
Thank you to everyone that helped us survive the two weeks of torment we endured.  We had so many friends, family and ward members take care of our family and we're forever indebted.