6.15.2014

Father's Day


   It's Father's Day! Today we are celebrating the BEST daddy in the world. This parenting gig has been far harder than you ever imagined, but you roll with the punches, always by our side to be our rock and our protector. You provide for us. You laugh with us. We love you Daddy!


We are also thankful for the many other fathers we have in our lives! They have all supported us, loved us, and been there for us whenever we needed them!

Pierce with Grandpa Jim


Pierce with Papa



Pierce with Grandad

Pierce with Great Grandfather (also known as Papa)


We love you all and are wishing you a very, happy Father's Day!




5.23.2014

Thoughts before surgery

"Rejoice in hope, be patient in tribulation, be constant in prayer." Romans 12:12 

This week has held more than we ever imagined. 2 surgeries, a seizure and three hospital stays. In the past week, we've watched Pierce endure more than I think I've ever had to in my 27 years.

When we arrived in Durham yesterday, Pierce woke up, realized where we were and pathetically said, "Go home, please." It broke our hearts to take him back to the hospital for the third time this week. We knew what was coming. He knew what was coming. And when the surgeon told us he would need surgery yet again, our hearts broke again. 

We are all so exhausted it's hard to describe the emotions. 

We are so thankful for you. Every text, call, email, Facebook message- they have carried us.

Trials have a way of bringing us to the end of ourselves. It's easy to trust when you have nothing else to cling to.  And therein lies a silver lining- trials shatter the veil of self reliance that we put up. They remind us how little control we truly have. And they point us to the One who can share in our suffering. 

Trials also fly in the face if the notion that if we can just bring more to the table, be happier, have a better attitude, etc. then God would rescue us. Maybe God wants us right where we we are. This dark hospital room is part of his perfect plan for our lives. The heart of the Gospel is that His mercies are not reliant on us. Thank goodness because this week I have had a pretty bad attitude. But his mercies have come. Maybe not when we expected or how, but they are there. 

Tomorrow morning at 1pm Pierce will undergo another brain surgery to revise his shunt. Please pray for protection against any adverse affects, against malfunction and infection, against post-op seizures and for a quick recovery.

Thank you for walking this journey with us.

Lindsay 

5.18.2014

Shunt revision/ Brain surgery nĂºmero 4


Most parents of kids with shunts wonder how they'll know when their kids shunt malfunctions. You're given this vague list of symptoms to watch for ranging from lethargy and vomiting to severe apnea. Honestly, if you have a premature baby, in the beginning you can find almost daily some symptom that fits in the "shunt malfunction" category. But obviously that's just them and shunt malfunction is not the source. And so I've always heard from other parents who've been there, that when a shunt fails, you just know. It's obvious. I always wondered what that meant, now I know! 

Yesterday morning when Pierce woke up grabbing his head and saying it hurt, I just knew. He never complains of pain. Never. So this had to be serious. Within minutes the vomiting began. And minutes later he was falling asleep on my living room floor. This is not an ear infection, not a stomach bug...no I've seen those things even in Pierce and they are minor. This was serious. I just knew. 

I quickly packed a bag, called my mother in law (since Nik was out of town) and we headed for Duke, which is 2.5 hrs away. The whole trip Pierce was puking, sleeping and crying. Every mile. As soon as we arrived, we were whisked away and in an hour or so Pierce was having CT scans and an x-Ray shunt series. And within a few hours it was confirmed that 1)his ventricles were very enlarged with extra fluid that should not be there and 2)his shunt was on the wrong setting. Pierce had a programmable shunt which has a magnet inside of it that controls the rate at which fluid flows. The neurosurgeon sets the setting externally by holding a powerful magnet over top of the shunt and turning a knob (very cool!). He was supposed to be on fastest setting, but he was really on a much slower setting, which could cause fluid to back up over time. A lot of people are probably wondering how he could be in the wrong setting and the truth is we don't know. They do know that microwaves, iPads, cellphones and  earbuds are all things that can change a shunt setting when introduced in close proximity to the shunt. Nevertheless, we were hoping the fluid build up was just a result of he wrong shunt setting. So they dialed him down and waited. But Pierce did not improve, in fact he declined. By 3pm he was extremely difficult to wake, unable to talk and his eyes were rolled back in his head. As a parent, this was very hard to see! 

So the Neuro team decided to tap his shunt by placing a needle into it and draining off excess fluid. They were convinced it was just the wrong setting. I mean what are the odds it would be the wrong setting combined with a malfunction that just happened to coincide at the same time? (I laugh now typing this because Pierce has always been one to fall into the small percentage category. Always.)

After tapping his shunt, they realized that the shunt was indeed malfunctioning because they were unable to draw off any fluid. At this point, he was unresponsive and his heart rate was dangerously low with high blood pressure (tell-tale sign of increased pressure in the brain) and so they knew they needed to act fast. His neurosurgeon who had been calling to check in on him all day came in quickly and then they took him into surgery around midnight, some 13 hrs after we arrived in the ER. The surgery took about 1.5 hrs (although he was away from us for 4) as Dr.Muh searched for the issue. She found that the end of the shunt inserted into Pierce's ventricle was completely occluded by scar tissue. So they installed a new proximal catheter, and while they were at it, they changed out the shunt from a programmable to a fixed, non-programmable shunt. The non programmable shunt flows at a rate comparable to what his programmable shunt was (supposed to be) set on. Having this type of shunt will save Pierce from having to avoid magnetic things his whole life. And it will mean he can have all of his MRI scans without having to have his shunt reset afterwards! Woo hoo, one less thing to worry about. Fortunately the tubing that runs from his head to his abdomen (where the shunt drains) was working beautifully so they left it alone. That was one less painful thing as that means an abdominal incision and soreness where the shunt tubing is pushed through the fat layers. Ouch!

And so around 430am, Pierce woke up feeling much better. He was able to sleep last night with the help of heavy pain meds and then this morning played a bit before the pain got to him. We have struggled to find the right combination of pain meds for him but he was able to sleep this afternoon and then now. Fortunately, and so comforting to see he has improved tremendously neurologically and is back to talking and eating. 

For now the plan is to stay here another night and see how his pain management is before heading home. You guys can be praying that his shunt works correctly for a really, really long time (like forever!) and that he does nor develop a post-op infection.

In a crazy twist of irony, a year ago yesterday we were also at Duke dealing with severe brain pressure issue related to his cyst fenestrstion and thinking it may have caused a shunt failure. I think May 17th may be a day we avoid next year :)

Thank you to all who have written, called, texted and shared our story. We are so thankful to have you on this long and sometimes weary journey. We love you guys and are so thankful to have the support system that we have! 

-Lindsay