This will be somewhat quick as I am exhausted!
We had a fun weekend as we always do at the Knights. Alex and I arrived Saturday. The kids quickly picked up where they left off. I have loved to watch Alex and Samuel's relationship grow. Alex finally has the little brother he has always wanted. It is awesome to see how loving and caring they are together. The best part of their relationship is that they make each other feel normal. From licking and smelling foods together, to getting procrit shots and even hooking up to their D10 last night in preparation for their MRI's. It is just easier when you have someone like you to navigate this crazy world. I pray this frienship continues to grow and flourish.
Alex and I had to leave their house this morning at 4:30 to head to the hospital. We were taken back to the MRI holding area around 7:30. We quickly got Alex started on his usual large concoction of drugs to sedate him. Unfortunately he suffered from another seizure during this process. It was pretty short and we continued. I left Alex at 9:00 and he was getting ready to be intubated. Our favorite anesthesiologist was taking care of him and kept me informed. I got a call around 11 to inform me that 2 of the tests would not be performed as the technician had called in sick. I was pretty upset as 1 of these tests has been rescheduled 3 times and has needed to be done for 18 months. The only good thing is that instead of 6 hours, Alex was done in 4. We completed his brain MRI, spine MRI and lumbar puncture. I was back in recovery with Alex around 1:15.
He slept for a while as we tried to sort out soem confusion regarding our admission. We got up to our room around 4:15. We had been told that Alex needed to lay completely flat for 5 hours due to the lumbar puncture. We did that and around 6:15 he attempted to raise the head of his bed a little. Unfortunately, he immediately got a headache which is caused by a slow leak of spinal fluid at the puncture site. We attempted to lie down a little longer and then sit up again with the same results. The neurologist on call came back again. After some discussion with Dr. Koenig it was decided that he needed to stay flat the remainder of the night and hope that it will be better tomorrow. We also gave a dose of tylenol. We have the availability to give a stronger pain medication if Alex feels it is necessary. If this is better in the morning great. If the headache does not get better it may be necessary to intervene again. We will just watch and see. Because of the seizure we have also discussed repeating an EEG. We will make a decision on that with Dr. K tomorrow.
Alex is sleeping now. We still have him on oxygen as has become our usual after anesthesia. He has been a trooper and even tried to smile and greet some of his old buddies as the visitors continue to come by. He is so loved around here. It makes him feel really special that everyone is so happy to see him.
The plan right now is to assess how he is doing tomorrow and whether we are redy to progress with our plan to restart feeds. Once I know more I will update.
Thanks for all the prayers.