Where to begin. It's taken a few days just to recover from the events of the weekend and then I realized I had completely forgot to update everyone on what actually happened on Friday/Saturday of last week. So here goes nothing....
We arrived home around 4pm on Friday from Riley. Blake was super happy, very playful and could not get enough of being home. We relaxed as a family and cuddled on the couch.
At 9 pm Blake had fallen asleep on the floor so Zach and I took him and laid him in his crib. We have a video monitor, and no sooner had I grabbed it from the room and sat on the couch Zach and I heard Blake cough a few times and then heard the most violent heartbreaking screams. We ran into his room only to find his whole bed and him covered in vomit. (Except for his actual blanket- bubba loves it so much he somehow, it's a mystery how, kept it clean and ready to cuddle with). We cleaned him up, changed his clothes and as we took him into the living room and sat down again- it happened again. I proceeded to call Riley's on call neurosurgeon- they paged them. Even though the wait was really only a few minutes it felt like hours before they called back. I quickly told a brief summary of Blake's history, told that we had just been discharged hours earlier, had surgery on the 8th, his shunt was externalized for four days and then had surgery again on the 13th to covert the VP shunt to a VA shunt....and blah blah blah. The doctor then proceeded to share her thoughts. Post-op vomiting in toddlers can be normal and usually caused by constipation and she told us to call if he had an neurological changes, or if he continued to throw up into the morning. Deep down- Zach and I knew this wasn't a GI complication both of us believed it to be the shunt but the professionals did not think so- so it made our minds ease a but. Until a few hours later when the vomiting persisted. I called again to Riley now early Saturday morning- where I spoke to a resident who mimicked the same instructions as I was given the previous night. I was quite adamant that I thought it could be his shunt but he said without neurological changes that would be a stretch and he believed that it was either constipation (although I had pointed out he has had many bowel movements since the surgery that was four days ago!) he then told me to take Blake to the ER at first signs of dehydration but that the GI issues should pass with time. Believe me I have now rolled my eyes a multitude of times. The day continued as did the vomiting. Blake's stomach had completely concaved on itself it was sunken in and he was getting paler by the minute. So we packed- we packed as if we were going to Riley because we knew- in our hearts it was the shunt. So we went to the ER Blake received fluids and was actually able to keep down some pedialyte. After a kub, a X-ray, some labs and everything came back negative the doctor attempted to send us home. It was then that this momma lost it! I just knew something was wrong with his shunt but not one doctor that I've spoken too believed it because neurologically Blake could still follow commands and look at us and blah blah. But Zach and I know our son and we knew it wasn't just a GI bug. So we agreed to get out of their hair and go home....ONLY after they CT his head. The doctor continued to tell us this would not show anything but ordered it for us anyway.
Then things all went down hill from there.
He came back with a sullen face to tell us Blake's ventricles in his brain were "slightly"dilated but he did not know Blake's normal. But that he would try to get Riley the image for comparison. I'm not a doctor but I will tell you Zach and I saw the CT scan I think slightly dilated was a huge understatement. Once Riley saw the images it was pretty quick from there on out. The ambulance was called, Blake was vomiting again, and they told us we would be having another emergent surgery. On the ambulance drive there Blake was given Mannitol emergently to help with the swelling in his brain and prevent any damage. I rode in the ambulance as Zach and my other in law followed literally right behind us the whole way.
Once at Riley we basically relived May the 8th. They tapped his shunt to test for infection then prepped us for surgery. Got a shunt series X-ray. At this point Blake was worn out, pale and to be quite honest looked like hell. I've had some scary times with Blake and this was pretty high up there. He just appeared so weak, so fragile, not smiling, not really even able to stay awake longer than a few minutes. It was definitely a feeling of helplessness. On the shunt series it showed right below the clavicle that the shunt catheter was kinked blocking the CSF from draining.
They took him to surgery around 6:45....and Zach and I passed out from exhaustion in the surgery waiting room while my mother in law powered through and sat by our sides. I woke shortly after 9 in a panic once I realized the time. Thankfully it wasn't long after, maybe 15 minutes or so when the doctor came out. The shunt catheter was straighten and they actual widen the curve of the catheter by making incision from Blake's neck down to the chest. However, that wasn't all. Apparently not only was that portion of the shunt not working but the actual reservoir portion in his head also was blocked. So they had to go in his head and replace the reservoir portion of his shunt....thankfully though Blake should recover back to his normal!
It took a few days for Blake to
start feeling somewhat better. And it wasn't until my birthday, Monday, for us to see that smile we've all learned to expect and love from Blakers!