Max - Keeping Us on our Toes



Like Zoe, Max apparently likes to keep us on our toes when it comes to his health. At three months old, Zoe was diagnosed with urinary reflux. Max decided to scare his parents a few days after birth. Okay buddy, you win. While we were at our first doctor appointment with Max, our nurse practitioner, who is fantastic, noticed that he had what is called a sacral dimple. The sacral dimple can indicate a problem with the spinal cord. She ordered an ultrasound for Max at St. Louis Children's Hospital. I don't know about you, but when people mention different issues with the spinal cord and my child in the same sentence, it's a bit worrisome. By a bit worrisome, I mean cry for a half hour and get a big comfort Diet Coke.

A couple of weeks ago Max had his ultrasound. During the ultrasound they found a "cystic area" at the base of his spine. A not so tactful radiologist told us about the "cystic area" and then left the room. I understand now why most radiologists are in a dark room in the basement. Her bedside manner left much to be desired. She gave us just enough information to scare us to the core. I reached out to our doctor's office to make an appointment and fill them in on how the ultrasound went. Our nurse practitioner called us on her day off because she knew this mama needed some peace in the situation, to tell us that Max does have a tethered spinal cord. She informed me that he would need to see a neurologist and would probably need an MRI but that tethered cords can be fixed. I did feel much better about the news once I found out that it was something that could be fixed. However, over the course of the two weeks we waited for the MRI and appointment I grew a bit worried that they would find something else on the MRI. At this point I was only 2 weeks post partum, I was full of hormones and lacking sleep. When you're up at night feeding a baby, you have a lot of time to think about the worst case scenario. 

Today Max had his MRI and appointment. We got to Children's at 7am for the MRI. They swaddled Max in what seemed like 15 blankets. Let me tell you, that MRI technician could probably make a lot of money swaddling babies if he offered his services to knew moms who can't get their babies to sleep. They put some pads around Max's head to keep him still and make sure he couldn't hear the noise from the MRI. They had my little baby wrapped and wedged and put into a tube. I usually don't get nervous when my kids get scans but I was nervous that he would be scared. For the record, he was a champ and ended up falling asleep. I learned that MRIs are LOUD. Holy Cow, you'd think that in this day and age with all the technology we have, they could make the noise a little bit softer in those things. It sounds like someone put a baseball bat in a dryer and then put the dryer on high speed. 

After the scan, we met with the neurologist. Dr. Strahle took a good deal of time with us. She brought out a model of the spine and explained what was going on. She confirmed that he does in fact have a tethered spinal cord. Thankfully, he falls on the side of the tethered cord spectrum that is not as serious. If left untreated he would most likely develop urinary issues, back pain and weakness in his feet. Thankfully it was caught early and the cord can be untethered. Depending on the radiologist's full report, he will have corrective surgery anywhere from 6 months of age to 2 years old. At the end of her explanation and after she had answered our questions, the doctor said, "We'll take care of him; he's going to be okay." This statement put my worried mama heart at great ease.

We are so thankful to our nurse practitioner, to our doctor's office, and to all the medical professionals at Children's Hospital who helped us with this diagnostic process. We are beyond thankful that his condition can be corrected and that he will be okay. This news was quite welcome after two plus weeks of worry. We will keep everyone posted as to when the surgery will be.

That's all for now. God is good.

4 comments

  1. Wow! Katie, what a blessing that you have such an attentive NP! Praise the Lord! We'll be praying for you all as you prep for surgery. Thankful that this can be corrected in due time.

    ReplyDelete
  2. Bless you heart Katie!! All our love to you and your beautiful family!! We love you!!
    The Roth’s

    ReplyDelete
  3. Glad he's good. ❤️. I think MRI's sound like jack hammers

    ReplyDelete
  4. Wow, that sounds like a scary two weeks!!! You guys are so brave, though, and strong in your faith, so I know you’re doing ok! Praying for God to continue keeping you in His care.

    ReplyDelete