Our Story

Where to begin? My journey as a medical Mom did not start right away. My second child, Callum was born at 39 weeks at 8lbs 10 oz and 21 inches long. Although he didn't eat well due to a tongue tie that was clipped at 3 weeks old, Cal seemed to be a perfectly healthy baby that had odd shape to his head. His pediatrician wasn't worried about it everytime my husband or I brought it up so we tried not to worry about it as well.

Fast forward to his 4 month check up. We had noticed his head shape was continuing to change and brought it up to his pediatrician again. I remember making the lighthearted comment of "this can be fixed with a helmet right?". When I knew in my heart it could not. The pediatrician confirmed my fears and said we were being sent to Gillette Children's Specialty Clinic for further tests and diagnosis.  

On 01/03/22 we received the news that Callum had Left Lamdoid Craniosynostis with a Chiari (kee.aa.ree) and would need Cranial Vault Reconstruction to open his skull and allow room for his brain to grow properly instead of being pushed into his spine. The surgery was scheduled for 03/17/22 and other than finding out Callum was allergic to oxycodone, it was a success.

After surgery, life continued. My poor son Henrik had his own stint in the hospital a week after discharge due to pneumonia and Mom and Dad were exhausted. We returned to work and our new normal began. 

At Cals 4 month post op, his Neurosurgeon expressed concerns about him not hitting his milestones. He was almost 1 years old and still could not sit up without assistance or bear any amount weight on his legs. We knew he was a little delayed but we were not aware it was a reason for concern. The Neurosurgeon decided Callum would need to have a 3 hour, fully sedated MRI to check the status of his Chiari and Brain.

We received the results of the sedated MRI in September of 2022 and were devastated to learn that Callums chiari had gotten worse and he would need Chiari Decompression Surgery within the next month to prevent further damage. Surgery was scheduled for 10/21/22 and all we could do was sit, wait and hope our baby would be alright. 

Surgery went well, thanks to our amazing Neurosurgeon and the team at Gillette. We were told that this surgery may need to be repeated in the future as Chiari Decompression Surgeries are usually not completed on children so young. Although anxious about the future we were hopeful that this would be the last surgery for some time if not ever for Callum.  

On 11/06/22 Callum got very sick and was not acting like himself. I took him to the children's emergency room where he was diagnosed with RSV and sent home. On 11/07/22, Callum continued to get worse and now the incision from his last surgery was swelling. I had been on the phone with Gillette all day and sending pictures to the on call nurses but my concerns were not being addressed properly. Finally, at 6pm I was able to get ahold of Sean, a nurse practitoner on Cals Neuro Team. I still do not know if this man realizes how truly important he is to me and my family but from the bottom of my heart, Sean, thank you for finally believing me. It was Sunday night so Sean set up an appointment for us to be seen first thing in the morning. 

Have you ever just had that gut feeling that something is seriously wrong and it can't wait? I felt like I was going crazy, but as I was going to bed Callum let out this terrible cry that made my stomach drop. I called my sister bawling and she confirmed that it's better to be safe and go to the ER instead of waiting.

The drive to the ER will forever be ingrained in my head. I was crying and talking to my husband on the phone as Cal was lethargic and quiet in his carseat. Michael had to stay home with Henrik as it was 7pm and he was in bed. I got to the ER in 15 minutes and was told there will be a 4 hour wait just to be checked in. At this point I lost it. I couldn't even talk to the nurse to tell her the reason I was there. I eventually was able to write down that Callum had just had brain surgery and wasn't very responsive. We were rushed back immediately and they brought Callum back for an MRI where they determined he had hydrocephalus and would need an emergency surgery to have an external drain placed on his brain. I met with Neurosurgery at Children's and they discussed transporting him to Gillette for the surgery if he was stable enough. Within the hour, I was in an ambulance with Cal and 5 paramedics as my husband was on his way to Gillette.

When we got to Gillette the Neurosurgeon on call was able to explain what was going on with Callum and show us the scans of his brain. It was completely full of spinal fluid and causing a lot of pressure. As he was rushed into surgery, Michael and I were brought to a room to try and get a little sleep. When we woke up 3 hours later we were told Callum will be prepped for a 2nd surgery to drain a cyst that was found on his cerebellum. His Neurosurgeon would be completing that surgery. After the 2nd surgery Callum was brought to the PICU to be monitored until he was stable and we could determine next steps. After 2 horribly long days, I was finally able to hold my baby. Now, it was a waiting game as his incision was leaking spinal fluid and the Neuro Team was determining if a shunt would need to be placed. 

Callum had his shunt placed on 11/16/22, and went for a routine CT afterward. Just as we thought things were looking up, the CT showed a blood clot on Callums Cerebellum. He was put on a heparin drip (blood thinners) for 48 hours. Michael and I then were taught how to give Callum lovenox shots to continue the blood thinners and instructions to follow up with a neurologist at Children's after our eventual discharge. 

We were able to be discharged 11/26/22, just in time for Thanksgiving, but unfortunately ended up back at Gillette 2 days later with a serious infection. Callum was put on 3 strong antibiotics and was able to clear the mystery infection without removing his shunt and we were officially discharged 12/01/22. 

After discharge, Callum was throwing up 6 times a day and losing weight rapidly. After many calls and ER visits we consulted the doctor about a G-tube. At the consultation, it was determined that Callums shunt tubing would need to be moved to the other side of his stomach before placing a G-tube to eliminate the increased risk for infection. The 2 surgeons spoke to each other and Callum had his first shunt revision 02/10/23 where they replaced the valve to stop his brain from over draining and moved the tubing to the right side of his body. Callum had his G-tube placed on 03/01/23 and although there have been minor setbacks, and many appointments he is starting to thrive. We still have a long road ahead but at 2.5 years old, I am happy to report that Callum is blood clot free, walking, learning to talk,and learning to eat with the help of PT, OT and Speech as well as his 0-3 program through his school district. He has a developmental delay due to his past but continues to surprise us daily with his strength and loving personality.

In this blog, I will post about the good, bad, and the in-between of life as a medical Mom who no longer can work and is juggling life with an almost 5 year old and 2.5 year old. Thanks for joining me.

Always,

Jasmine