Team Mikey

Many of you know about our 4 year old little man, Mikey. He is a true superhero! Spring break 2018 he came down with the average cold, got better after a week. Didn't think anything about it. That next week I noticed him limping, I was of course concerned and got him into the pediatrician right away. His symptoms continued to get worse, he came down with a weird rash and continued to gain weight. He was then diagnosed with hsp, which is a vasculitis that attacks the kidneys & interstines. We were in the doctors office every other day and we got a diagnosis pretty quickly. We immediately came to Mott and we got paired with a great team of doctors, in fact, the Dr. We got paired with is working on finding a cure, for his now disease, nephrotic syndrome. We spent a day in the hopsital, came home for a few weeks. He then got a kidney biopsy because we were wondering how much this disease has effected him, the results came back he had kidney disease. We were not expecting this, we found it early and we thought we could beat this right off the bat. After 10 days in the hospital, Mikey was released from the hospital. Two days later we were right back in. Then we were home for 2 weeks and came in because we couldn't control his blood pressure and fluid gain on our own. That's when our nightmare happened. They next morning the doctors came in and made it sound like we beat the hsp. 10 minutes later, mikey is starring off and is shivering, I am the only one in the room so I called the nurse right away, when she came into the room he was grey and wouldn't respond to us, she knew something was wrong because any time any one would come into the room he would tell at them to get out. He became unresponsive and he had to be intubated for a couple days. Come to find out, he had a seizure and was cause by his high blood pressure and fluid leaking into his lungs, that ultimately caused him to have fluid in the back of his brain, called PRES. He was put into a medically induced coma for 48 hrs, that night he had 16 more seizures, which was cought by the EEG machine.  We are so greatful we were at the hospital when this happened and the doctors responded very quickly and got him stable. Mikey was in PICU for 10 days then once he was stable enough, he got moved to the kidney floor. He was in the hospital for a total of 17 days. We were so greatful to be home with our little man. We were home for a month and mikey seemed to be feeling better. He was playing like normal, climbing, even started to run! Recently, we had our follow up nephrology appointment and his labs came back low. He is still spilling protein into his urine. So we had to get a second kidney biopsy to see where we are at. He still has the hsp and he is still fighting. This has been a very stressful time for our family. We have had to completely switch our working schedules around so mikey is with with mom, dad or JaGe (grandma Barb) we never expected for this disease to be progressed as far as it has and never dreamed of it taking this long and possibly longer to fight! We are not giving up on our precious little boy. Many family & friends have asked how they can help. We are so busy and we thought we could do this all on our own. We have come to the point where we need to reach out and take our supporters, support. Not ever knowing when we will be in the hospital or not, we grab small amount of groceries a few times a week, we also spend a lot on money on gas, parking fees, meals and medical bill's. We chose to do a GoFundMe page because we never know what we need until we need it right then. We are so greatful for each and every one of you. Thank you all for your love, prayers & support!