At two months of age Max was diagnosed with Metopic craniosynostosis with trigonocephaly. (The skull is made up of several ‘plates’ of bone which, when we are born, are not tightly joined together. The seams where the plates join are called ‘sutures’. As we grow older, the sutures gradually fuse (stick) together, usually after all head growth has finished. When a child has craniosynostosis, the sutures fuse before birth. The metopic suture runs from the front (soft spot) through the forehead to the top of the nose.)When Max was six months, he had a cranial vault reconstruction (CVR) in order to open his metopic suture and allow his brain room to grow. This procedure involves temporarily removing the skull bones (craniotomy), reshaping the skull and replacing to form new shape to skull. Max needed plasma transfusions during the surgery, his eyes swelled shut for six days and he spent a week at Gillette Children’s recovering.
This was just the start to a long road of serious medical incidents that have occurred over the past 12 years.
Max developed his first case of RSV/pneumonia at the age of nine months, requiring hospitalization once again. His struggle with pneumonia continued through the first eight years of his life as he was diagnosed with pneumonia several times a year and required hospitalization multiple times.
On April 3rd, 2015 Max started complaining of a headache and started developing a fever. Over a few hours, His fever became serious (104 degrees) and we were told to bring him to the Emergency Room. Max was admitted to St Cloud Hospital and over the next few days went through a battery of tests. On Easter Sunday 2015, Max was diagnosed with bacterial meningitis. By the time they determined what was going on with him the swelling in Max’s brain became so significant it affected his vision and altered his mental state. Max spent a week in the hospital and then went home with a PICC line in order to continue IV antibiotics for the next three weeks, unable to attend school or play his favorite sports until he was fully healed.
We spent the next year working with U of M and Mayo Clinic trying to figure out why Max continues to get so sick. This involved monthly trips to the cities where they would take large amounts of blood from Max over the next six months. Eventually these tests showed that Max’s immunizations from infancy were non-existent in his body (so he was given a booster for all immunizations) they were also concerned he had an immune complement deficiency, so he was placed on prophylactic antibiotics for the next year. The antibiotics did a number to Max’s stomach and after almost a year on them the doctor at Mayo decided the side effects outweighed the benefit and he was taken off them.
The booster immunizations seemed to have helped Max’s body become stronger to fight infections as the next four years he was fairly healthy. He still had a few cases of pneumonia (however, we were able to treat at home vs hospital) and normal colds/strep, etc..
Our guard was down….
On December 13th, 2019 Max had a hockey game in Plymouth at 9pm. It seemed like any other night in our house. We ate supper and headed to the cities. Max played a full hockey game and appeared normal. On the way home from the game, he said he had a headache (but did not indicate that it was anything significant). When we got home at 11:30pm, he took two Advil and went to bed (making sure to tell us he planned to sleep in tomorrow morning).
On Saturday December 14th when we went to wake Max up in the morning, he was unresponsive and showed significant signs of weakness on the left side of his body. He was transported to St Cloud Hospital via ambulance and after initial CT scan where the radiologist found a mass on his brain, Max was airlifted to Children’s Hospital in Minneapolis. Upon arriving at Children’s we were told that Max would need an MRI and then would be headed directly into surgery to drain the spot on his brain.
After the MRI, the Neurosurgeon and ENT decided that the best/least invasive option at the time was to go in through Max’s nose, reconstruct sinus cavity and clean out infection in his upper sinus. We were told at this time that there was an abscess forming on his brain and that he may still need brain surgery but it had not fully encapsulated yet, so they wanted to try and treat with antibiotics first to try and avoid spreading the infection to other parts of his brain.
Max spent almost three hours in the operating room and then was moved to PICU for the next three days. He struggled with fevers, altered mental state and terrible headaches, so over these three days he was heavily medication to try and keep him as comfortable as possible.
On Monday (Dec 16th) another MRI was taken, and it showed that there was still infection forming on his brain. So, the plan was to keep him at Children’s for at least another week and repeat MRI after seven days (an abscess can take seven days to fully form/encapsulate. Over the next seven days Max received very high doses of antibiotics and lots of rest. He underwent a procedure to have a central PICC line placed in as he would need to go home on antibiotics for at least six weeks.
Max’s next MRI (Dec 23rd) showed that the brain abscess did fully encapsulate and had grown in size. On Christmas Eve, Max underwent another surgery where the neurosurgeon drilled a hole through his skull and with navigation went in with a needle and drained out the abscess. He responded well and bounced back quickly from surgery. At noon on Christmas day the Neurosurgeon came in and said we could go home. We were home celebrating Christmas by 6pm on Christmas day after 8 day in the hospital.
This was not the end. The scans showed that Max had hole(s) in his skull from the upper sinus cavity to the brain. This is how the infection in his sinus made its way to the brain. These holes could not be left open or he would continue to get sick, however, it was best to fix them after the infection was gone in order to avoid spreading the infection to other parts of the brain. So, Max spent the next six weeks at home on antibiotics with his medical team following him closely. He had follow up scans which were looking good and continued IV antibiotics while home. Next surgery was sent for Feb 12, 2020.
After being on the antibiotics for so long, Max started to develop severe stomach pains leading us to the ER again where he was diagnosed with gallbladder sludge and gall stones. This was most likely caused by one of the antibiotics. After the ER visit, Max was switched to a different IV antibiotic to hopefully stop the sludge from building. He started experiencing more headaches and fatigue over the next week and on Feb 3rd Max developed a very large lymph node on the right side of his neck. The following day Max spiked a fever and headache along with multiple swollen lymph nodes on his right side, so we headed back down to Children’s emergency room.
Max was admitted back into Children’s. MRI showed that his right sinus cavity was again filled with infection. After several days with high fevers, Max’s team of doctors decided to move the surgery up early.
On Feb 7th, Max had his next surgery (bilateral frontal craniotomy, cranioplasty and removal of upper sinus cavity). Essentially, the surgeons removed Max’s skull, drilled out his upper sinuses, plugged the upper nasal passage so that infection would have no way to get to his brain and he would no longer have frontal sinuses. While the surgeons were in his skull/brain they felt that the new infection has not made its way to the brain yet again, however, they did note that Max had multiple holes leading through his skull and the team was thankful they moved the surgery up. Max spent the next five days at Children’s recovering. Surgically he was doing well and meeting all milestones but continued to spike high fevers for several days that no one could figure out why. Eventually the fevers went away, and we were able to head home.
Max has been recovering for the past few weeks and slowly increasing activity. Max has many passions. He loves to play sports (hockey, football, baseball and golf) as well as hunt. He enjoys spending time working and helping out family. His hope is to start returning to normal activities over the next six months as he gets cleared from doctors and energy increases. The past few months have been difficult for him to not participate in the things he loves and being active.
Max has had a strong passion/desire for hunting since he was very little. He looks up to his dad and uncles and has waiting a long time to join them in the woods. The family hunting party does not allow kids to hunt with them until they are 12 years old (so this was Max’s first years in the woods). It was a very exciting fall for Max to be able to join the hunting party for the first time.
Contact Shot for Hope