Well here we are…. waiting. Something that is difficult to do when it is your child’s health that lies in the balance. Wondering how bad could it be? What if we didn’t catch it early enough. How come they are making us wait this long to figure it out? If we are waiting this long, maybe it isn’t critical. So much time to think isn’t always good.
What are we waiting for? Well towards the beginning of December I started to notice Xander’s soft spot was raised. You can’t see it, but I can feel it. The reason I started to take notice is that when we were in the NICU every nurse, doctor, anyone that dealt with Xander checked his soft spot. All the time. And it really made an impression on me for some reason. Like a view into the baby’s health through that tiny little spot on their head. And they check it at every doctor appointment we go to these days too. At first I did a little research online for raised, or the technical term bulging, soft spot. I read that it can be bulging especially if they are crying and upset or playing on their tummy or backs, but when they are sitting up and calm it should go down back to normal.
Well Xander’s soft spot wasn’t going back down to flat even when he was calm. I kept it in the back of my mind and we had to make a doctor appointment with the Pediatrician to discuss increasing his reflux medications since he had been fussier about eating lately, I mentioned it to our Pediatrician. She felt it and had the “Hmmmmm” look on her face. I mean Xander is usually the perfect happy silly baby that everyone loves because he is so cute right? She said we could wait and keep an eye on it or we could schedule a head ultrasound. I had been keeping an eye on it, and as it was nearing the end of the year and our deductible would be starting over in January I opted to go ahead with the head ultrasound and try to get it in before the end of the year. She went ahead and put in the order for it and I was given a phone number to schedule it.
I called the number the next day and found out their pediatric radiology staff are only there on Mondays and Thursdays and with the holidays coming up (it was Dec 19th) we weren’t going to get an appointment until January 3rd. So much for not starting on the deductible right away! We had our little ER visit right before Christmas for the breathing issue that apparently was the beginning of a cold and we had to schedule a follow up appointment with the Pediatrician. At that appointment I brought up his soft spot again and asked if she thought we should still do the head US. After feeling his soft spot she said “yes I think we should go ahead with it”. I am so glad she felt that way, I was back to thinking about that stupid deductible again which shouldn’t be part of my decisions when it comes to my son’s health and I had felt so strongly about doing it before and still did.
Moving ahead, January 2nd, You can read about this day here, Thanks again to my dad for helping with the garage door and my sister for saying she would help me get to Xander’s appointment the next day!
The next day we got to the hospital, checked in at the front desk and went off to radiology. We tried to find a place to wait that wasn’t near other people but the radiology waiting area was packed! We finally got called and went back to a room for the ultrasound. Xander did really well, the tech moved with him and was able to get the images they wanted. Then they went and got the doctor. She came in and did more of the ultrasound to show us what they had found. She said the third ventricle seemed to be containing more fluid than his ultrasound that was done when he was 6 weeks old in May. She said that it was interesting because if there is extra fluid in the third ventricle there is usually more in the bilateral ventricles but it didn’t seem that they were proportionally larger than the May ultrasound. She also said she couldn’t see a cause for the extra fluid so she was going to recommend to our Pediatrician that we get an MRI.
I was fine with that, they need a better picture to see what is going on. She didn’t seem overly concerned and I am probably just naive with medical stuff so I was pretty calm about it. I took the rest of the day off as a sort of mental health day and my sister stayed and we visited. I am starting to feel closed in with the lockdown for RSV. I still take Xander to the store sometimes but mostly I go from work to home or to an appointment if he has one and then straight home again. I have also been working Saturdays to make up some of the time I lose during the week to appointments so I am not always out of PTO. I miss interaction with other people. Not that I don’t love my Xander and Cory. So having a day with my sister (that had to miss Christmas with a sick family) was refreshing. The first thing that got cooked on our new stove was mac ‘n cheese with hot dogs in it.
The next day was a different story. I had my annual eye doctor appointment and just before I was supposed to go back for my exam my phone rang. It was our pediatrician. She told me (and I don’t remember exactly because sometimes so much over the phone is hard to process) that the had worked on Xander’s case more the night before and had taken the images back to the U of MN and a Dr. Guilliaume had agreed to take on our case … something about possibly there could be a cyst or something? And that we needed to call the scheduler, Matt, and set up an appointment for the MRI and they wanted to do it up at Amplatz so afterward we could go and meet with the Neurosurgeon and make a plan. Whoa!!! Neurosurgeon! That’s a doctor that does brain surgery. And a Plan?!?! Now I am freaking out. I am sure that is perfectly normal but not what I was expecting I guess. I am now imagining re-hospitalization, brain surgery, what if this is affecting his brain now and countless other scenerios.
I tried calling to set up the MRI and appointment with the neurosurgeon and Matt, the scheduler we were supposed to call, was on vacation that day(Friday) and Monday. That was the first problem. They transferred me to Jackie and no one had a clue what was going on. I got an appointment on January 16th, but then I thought about it and something didn’t seem right. I called Jackie back and asked if that included the MRI and she said no that it was just with the neurosurgoen and they couldn’t schedule an MRI because there wasn’t an order for one and it would be a liability for them without having seen Xander first. Uggg what!?!?! So I have to call my clinic, tell them the MRI hasn’t been ordered and I can’t make the appointment so can they please do it? After a few more phone calls back from the clinic, the final answer is that someone will call me when the MRI is scheduled.
I do a little Dr. Googling about extra fluid in/on the brain. Mostly come up with stuff on hydrocephalus so I find out what some signs to look for are that we would need to take him in to the doctor or to the emergency room. Somehow that is more comforting to just know what we can watch for. He seems to be normal, being his happy self and continuing to grow. He hasn’t done much in developing his gross motor skills, no rolling around yet but he has time, I am not concerned he is delayed yet and he is sitting up really well. He is doing new things every day and seems happier since we increased his reflux meds and has gotten over his cold for the most part. And since our appointment isn’t until Jan 16th, I told myself I can’t be freaking out that entire time about it or life will become difficult. We will just have to be patient and wait and see what happens, keep an open mind about things and not concentrate on possibilities, just keep an eye on Xander (like we aren’t all the time anyway) and settle down. I also looked into our neurosurgeon, Dr. Guilliaume. He just so happens to be the cheif of pediatric neurosurgery at the U of MN Amplatz Children’s Hospital. Are we lucky or what? And reading about his schooling and interests and that he has worked on finding minimally invasive procedures, like through an incision in the eyebrow or nose, or small inscisions in the base of the back of the head, so that the child doesn’t have big scars later in life, made me feel a little more relieved.
We had a good weekend, I worked most of Saturday and needed some mom time that night and we had a good day on Sunday. Monday came around and no phone calls about the MRI. So Tuesday morning I call up this elusive scheduler Matt to ask him what’s up? He was soooo nice! I wish he hadn’t been on vacation. Anyway he looked at what was going on with our stuff and found out that our clinic had said they would set up an MRI at Ridges. Yeah right. He asked what I wanted to do, they could schedule it at Amplatz for me or I could call Ridges back. Well Amplatz is a children’s hospital and I figured they do this every day, so why not do it there. So we now have the MRI scheduled for January 15th, the day before the meeting with the neurosurgeon. He will have to be sedated so he doesn’t move during the procedure so I am sad to think about him having to get poked again. So that is what we are waiting for.