It has been a really intense past 6 weeks since Jack’s shunt revision, we have watched and waited for Jack to feel better but instead noticed subtle to not so subtle signs of what would appear to be a faulty shunt. We tried to vacation which ended with a visit to the hospital to adjust the shunt valve. We have had to postpone chemo to attack antibodies, missed doctors appointments, missed more school and have spent countless hours trying to figure out what is going on. All along I was praying we would soon have some time to recharge our batteries. Even God took a day to rest, right?
As time passed the symptoms worsened from headaches, nausea, dizziness to lack of appetite. So once again we visited the ED pleading the need to have our Jack back. However with minor clinical presentation at the time and a normal MRI, he presents as okay. However the MPS family knows how unique MPS patients are and how our children sometimes present minor but there is something major. After many conversations, the same conversation for the 4th time, the team agreed to explore the shunt. Side note: I would love to find a neurosurgeon who was interested in MPS who would study and understand the disease and its neuro effects so that we parents (and adults w/ disease) wouldn’t have to put so much energy into this area. Our kiddos are so unique and often break all the typical hydrocephalus rules yet its never fully understood by the experts. If you know any neurosurgeons to recruit please let me know, I’m adding this to my “to do” list.
So, Jack had surgery yesterday morning. There was no glaring issues with the shunt but the neurosurgeon replaced it and sent it off to be assessed. Now we watch him. Today he woke up in a good mood and hungry. He ate more food this morning then he has in the past 2 week. I say good sign! I say please send us home soon! I’m ready to recharge my batteries! And most definitely ready to have Jack back!
*A very important day is coming up, May 15th, MPS Awareness Day. Please join us on this day by wearing the color purple and sharing Jacks story. Please share Jacks website Here’s Jack The more awareness the more opportunity for interest, the more interest, the more likelihood we can find doctors and scientists to help find a cure.