Jul 25, 2019 Latest post:
Feb 12, 2020
Jack the eldest of Da Krakens! He was born at 33 weeks and 6 days and his brother Jesse was out 30 seconds later. Day 1 he was a fighter. Both of the boys had to fight and we were more concerned with Jesse’s health as he was having more issues. On day 26 in NICU we found out there was something wrong with our son’s brain. At the time we did not fully know what it was or how this would affect us and him for the years to come. But Da Krakens got to come home on Halloween. We learned that he an arachnoid cyst in the choroid plexus of the left ventricle. and we were trying to get to him being 6months old before we had a procedure done. However; due to the increasing size of the cyst Jack has a fenestration on 1/13/2017 followed up with a shunt install on 3/1/2017, and Revision on 4/21/2017. There were further complications in July 2018 but we were able to get them solved with no procedures and thought we were in the clear just before their first birthday in 2017!
About a year later jack started having issues again. In late September 2018 with "episodes" consisting of vomiting, lethargy, paleness, irritability/appears to be in a lot of pain, and bradycardia (numbers dip to the 60's; his normal is about 90 - 113). The first episode, he vomited 13 times overnight, and then went to sleep for 62 hours straight. Additional hospitalizations that Fall, had him asleep for 48 hours, 54 hours and 24 hours. Because Jack acted normally between these episodes and his cyst had gotten smaller compared to his checkup scans earlier in the year, the neurosurgeon did not think it was due to a shunt malfunction. Thus, we went through extensive genetic testing and a 48-hour EEG to check for seizures. During his 4th hospitalization at the end of Nov, on the 4th day in the hospital, his scans showed increasing fluid in the brain compared to the day he checked in for that stay. That prompted them to do a shunt tap and then a shunt revision because it appeared to be occluded.
Jack was great and normal afterward until Feb 13, 2019 when the episodes started again. This spring & summer, the episodes were shorter in duration, but more frequently occurring. They went to once a week and then almost daily. Again, because he got better between episodes and the scans didn't show fluid buildup, the neurosurgeon said it wasn't a shunt/brain issue. We were then referred to GI. GI thought it could be cyclical vomiting syndrome (CVS) , so we started medications for that. However, the symptoms persisted. We called the GI doc to see about different medications and he said Jack's extreme pain/irritability was not normal for a cyclical vomiting patient. He felt we needed to revisit the brain, so he called our Neurosurgeon. The surgeon agreed to do an Intracranial Pressure Monitor (ICP) on June 10th. The ICP his numbers hovered in the 30's-50's and spiked as high as 89 (Normal is 0-15). We also saw negative numbers (-7) when he was sitting. Thus, the surgeon changed the shunt valve to an OSV II which he thought would better regulate the pressure. For 2 weeks post-op, Jack was a new kid: he had the stamina, no vomiting, no pain, no issues at all. However, on June 29, he started having symptoms again.
We have created this site to help keep people up to date on Jack as well as possible for our own sanity. We are not sure how this will evolve or how often update will occur. Thank you for all of the prayers and well wishes!
We know that God gave Jack a twin, Jesse, to help him through this and the fact that Jack has hit every milestone is a testament to that!