Three shunt malfunctions in less than a month is not how We expected to spend this spring. This admission honestly threw us for a loop....we had believed that finally we were in the clear. Zach and I traveled to Indy early this week and actually had follow ups with Blake's neurosurgeon on Wednesday and his developmental pediatrician Thursday- all appointments went well Blake seemed to recovering quite nicely. They did however see that the fluid on his belly from the beginning of May (the reason they had to move the shunt out of his belly) had still not absorbed so they were talking about needing to come back in a month for a possible other surgery to removed the fluid. We obviously did not even get that far! So we came back home after a few days in Indy Thursday night and Blake was doing just fine- back to eating normally, getting more vocal and moving around a lot easier. He still tired out quickly but all in all was doing bounds and leaps better than that time last week.
Early Friday morning around 4:30 all of us were sleeping and Zach woke up when Blake started to violently and continuously cough. We looked at the video monitor and he stopped. I got up to get him a sippy cup with some water and by the time I entered his nursery to give it to him it started again followed by the shrilling scream and vomiting that I was already way to familiar with! Zach immediately helped me get him into the living room when his foot started to tremor, and his head veins became increasingly predominant. All signs we had seen before, with the last shunt malfunction. So we called Riley- and they instructed us to pack and just head on back up to Indy.
We basically relived 9 days previous to this event- we arrived, they tapped his shunt and sent fluid off for testing to make sure no infection. They then quickly got him into the OR to do exploratory shunt surgery since there was no obvious signs of kinks or areas of concern on the shunt series. It was at this point Zach and I waited. And waited. And waited some more. Dr. Ackerman then came out to the waiting room not necessarily with the best of news. There was really no outstandingly obvious sign of why the shunt malfunctioned this time. They had to replace the top shunt portion in his head (again) just as they did the last time. However the last time they knew why it clotted off at the upper portion- because there was a kink in the catheter at his collarbone- this time everything was intact, and draining well except for the new top part which clotted again.
Her theories---they are checking his heart to see if that is the problem. They are checking by doing an echocardiogram (this helps by looking at pressures within his heart- with his history of having an open PDA and then having his PDA ligation surgery- she is wondering if the pressure within his heart are too high. If they were too high it would cause too much force upward causing the shunt not to be able to flow freely downward- then overtime causing it to clot.) clear as mud right?! if that comes back okay- which we are still waiting for word on- she isn't quite sure the cause of why Blake's shunt is continuously malfunctioning.
But all in all he is doing well. They had the general surgeon come see him for his belly they figured why not look at it now while he's here. They did not seem to think it was means for concern as long as Blake continued to eat, drink and act normally! Which is a good sign- at least one surgery avoided!
Blake still has some pain here and there but is back to eating normally---like my skinny ' eats like he's fat' kid he is! Just been enjoying a lot of Mickey Mouse and Frozen!
It's been a roller coaster this month- and it looks like if they can't find a definite cause of why his shunt keeps malfunctioning it could end up being an even longer roller coaster ride! Hopefully though they will find a cause so his shunt will stop malfunctioning. During this time we can't thank everyone enough for the wide array of support, prayers and help we have received! It gets might costly to constantly be driving back and forth and I have yet to go back to work since the 7th and adding having to buy meals everyday for Zach and I it makes things a little tough. But with the support of everyone it has made things a bit easier! We couldn't be more humbled by the love that we have received from our friends, and family! Thank you all so much we can't say it enough!!!!