Little Sam decided to give us a run for our money, once again. While others were busy planning their 4th of July and weekend plans on Thursday evening, Adam and I were calling our pediatrician’s office, the Children’s Hospital E.R., and Sam’s neurosurgeon. Without a doubt, Sam’s shunt was malfunctioning. In about 24 hours, his head went from slightly full to bulging and we knew something was wrong. Our actual pediatrician doesn’t work Thursdays, so his partner decided to go with our request that Sam be seen and scanned at the E.R. However, in the meantime, Adam had called Sam’s neurosurgeon, Dr. Puccioni, and he advised us to just wait and bring Sam in to his clinic Friday morning.
Friday at 8:00am, leaving Jack home with the nanny, Sam and I were off to the surgeon’s office to have yet another CT of his head performed. Adam started his residency Friday (in a neurosurgery rotation of all things), so he couldn’t be there with us. Praying and praying that we were all over-reacting, I waited in a patient room with my little Sam smiling and jabbering away. How could there be anything wrong?! Sure, his head is semi-huge, but come on, the boy is perfect.
Dr. Puccioni walked in and said, “Well, you’re going to hate me. Or do you already?” “Kind of!” I responded. Sam’s shunt was not working anymore. Due to the meningitis, all of the debris that was left over had clogged up the entire shunt system. It was off to the O.R. for us.
Several hours later, Dr. Puccioni stopped by Sam’s room (Adam had arrived by then), and told us that after reviewing the CT a little closer, he actually wanted to A. try and just replace the valve, or B. replace everything, and also insert a second shunt. He would know more when he got in there…
Two hours later, Dr. Puccioni came out of the O.R. to tell us he had to go with Plan B. Replace everything. Add a second shunt.
Sam was his usual self hours after surgery… a little cranky because he wanted to get fed, and in a little pain, but still happy, smiling, and wanting to play with his giraffe. We were told I could come get him and take him home Saturday morning, pending the post-op CT results looked good. Whew!
Well… fast forward to Saturday morning. I walked into Sam’s room all ready to get my little man home. His nurse stopped me and said, “I was told to call Dr. Puccioni’s cell as soon as you got here. I’m sorry, but I think he’s going to have another surgery today.”
Numbness. That’s it. I couldn’t cry, I couldn’t say much. Other than swear words under my breath, and this is a family blog… So very shortly after, the doctor came in. We just looked at each other, and he said Sorry. We’re going back in.
Basically, Sam’s right side of the brain (where there were the 2 shunts) was just way too “crap-filled.” It wouldn’t be long before we were back in the O.R. Thank you meningitis. Puccioni was going to have to remove the larger shunt and move it the left ventricle. Obviously, the reasons and the surgeries were a lot more complicated than what I’m typing, but I can’t even think about it right now. Hopefully 2 shunts will take care of everything for at least a few more months. My little guy is freaking tough, but how much more can he take?
Remarkably we were still able to take him home last night. 5 incisions later, 2 brain surgeries in less than 24 hours… the kid is amazing.
I am so in love with him I can’t stand it. The back of his head and his poor tummy make him look like he is going as Frankenstein for Halloween.
Long term? We talked to Puccioni about this yesterday. Sam is going to be perfectly fine and “normal.” Having this many surgeries isn’t the best thing for a baby all of 5 months (adjusted), but because of the brain, it’s much better that we’re being proactive.
How are Adam and I holding up? If you expect us to be crying, emotional, etc… We’re not. We’re numb at this point. This is our life, and this is what we were put on this Earth to do. Take care of these fantastic, amazing little boys.
7 month pictures (a little late on posting)