I wanted to take time to just recap what all took place this week, as I understand sometimes people see the post out of order and its confusing. Last Sunday Koen was accidentally dosed too much of a medication (nothing that can hurt him just drop his blood pressure) so we were monitoring his blood pressure. Monday we went in to Baton Rouge to wish my grandmother and her twin a happy birthday, Koen had been more fussy than normal but we attributed this to the fact that we (Koens dr and myself) decided it would be a good time to take him off the medicine that he got too much of on Sunday (he was already on such a low dose and we were looking to wean it soon anyway). So Monday night we got a good normal blood pressure on him he was fussy that night but again we thought that was due to being off the meds. On Tuesday we drove into New Orleans early to go to his therapy , he was still fussy but had started to flush so I had his blood pressure taken at childrens, it was elevated so his dr at Ochsner asked us to come in. We saw his dr and to be extra cautious we were sent to the ER to monitor his bp . While in the ER he spiked a fever, continued to be flush and fussy and had a white blood count of 18k. In going over everything I mentioned a small raised area or bump on Koens head that we had noticed a week earlier but wasnt a concern since he had no other symptoms or neurological signs of a problem. He had a set of plain films (x-rays) and a head ct in the ER. The neurosurgeon reviewed than and wasnt concerned and we came home around 1:30am Wednesday morning. Wednesday when we woke up I talked to his pediatrician about follow up etc but she still didnt like the unexplained fever fussiness and the ct report, she asked us to come in to see her so around 1pm Wednesday we saw his pediatrician (guardian angel) where he was still flush, fussy and had a fever. She had him directly admitted to Ochsner where we went to the ER for imaging and labs. There was an issue initially with getting the MRI ordered, then it was canceled so we could tap his shunt but then the shunt tap (on left side)was unsuccessful and they scheduled him for a MRI the following day. Kirk and I didnt want to put off an MRI till the next day since he had already been without food all day Wednesday and his white count was now 27k, he had the MRI that night and the imaging showed he had an abscess near his left shunt. Neurosurgery came in and talked to us ( this was all around 2-4am Thursday morning ) and told us because the bone over the infection wasnt that strong that it was unlikely we would be able to replace it after removing it to clean out the infection. He had surgery Friday night (6-10pm) and surgery went well. He has an area of skull about the size of a Ping pong/golf ball removed from his skull which is much smaller than we initially thought. He is in pain, sleepy, swollen but stable. We havent seen too much of him yet since he is so sleepy. He always has either Kirk or myself at his bedside (we are switching off) and my mom has the girls in Baton Rouge. We dont know how long our stay will be. He is currently in PICU at Ochsner main campus, thank God we know and LOVE the staff there. We know he will be on long term antibiotics and will need a helmet but I dont have any other details yet. Feel free to call/text us with questions. Please continue to pray for Koen he is far from out of the woods but doing great considering. We consider the staff at Ochsner our family, and we love them and know that they love Koen like he is their own kid, its so nice to see them all (not under these circumstances) and show them all the pictures of Koen and videos of progress he has made . Im begging that we get all that back after this!
Posted on: Sat, 08 Nov 2014 16:59:20 +0000
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