So it’s really been a long time since our last update. A lot has gone on, some good some bad. I’ll post a few entries to catch everyone up to the happenings. This first entry won’t have a lot of pictures.
This is the recap of Julie and Madison’s trip to Michigan which ended in surgery back in Denver. Some of you may have heard this already, but I wanted to get it down for the record. It’s been a while since it happened, so I might have some of the facts a bit off. Any sorry for all the typos; I’m a little squeezed on time and just banged this out.
A couple of months ago, Julie took Madison to visit her great grandmother in upper Michigan. Madison had a little cough the morning of their departure, but otherwise she seemed perfectly fine. They left on a Friday.
Saturday morning, Julie called me to tell me that Madison had been throwing up since midnight. Vomiting is a sign of a shunt failure, but she also had a recent cough, so she could have just had the flu. Julie felt the best course of action was to head to an urgent care clinic. At least there, someone could diagnose her for the flu. Julie’s Aunt Alice, with whom Julie was staying, was able to drive her and provide support over the next long hours.
Sad to say, the urgent care clinic in Ishpeming, MI (pop. 6,700, gee that’s small) does not have a doctor, a fact Julie wished she knew prior to shelling out $50 for the co-pay. Next stop, the emergency room in Marquette (pop 65,000, not really small…but still pretty small), which is the largest town in that part of the state.
So the emergency room in Marquette has doctors, and they even have a CAT scan machine. What they don’t have is a radiologist to read the scan, at least not on Saturday. One look at Madison’s scan and the doctors diagnosed her with hydrocephalus. This is of course a “no duh” to us because that’s a condition that Madison has had since almost birth. Without a previous scan to compare to, however, no one can tell if she is getting worse due to a shunt failure. The doctors there agree it would be best to get Madison to a neurologist or a neurosurgeon.
If you Mapquest Marquette, you can see that there is nothing north of there, except a great lake and Canada, so Julie, Madison and Alice got into the car and started driving south. Madison is very groggy and almost totally non-responsive at this point. Any liquids she takes almost immediately come back up, so she is probably in need of hydration. Conversely, she is very uncomfortable and keeps rubbing her head, unable to sleep.
Since the drive to the next stop is going to be a long one, Julie called me and ask me to call our regular neurosurgery clinic for advice on where to go next. I got one of the doctors on the phone, and after mapquesting Marquette, he advised us to take Madison to Green Bay, WI (pop. 303,000…better). According to what he saw online, the Wisconsin Children’s Hospital was in Green Bay, so that was a good place to take her.
I let Julie know the news, and while she drove the 3.5 hrs to Green Bay, I called the airlines to see what options there were for travel home. Unfortunately, it was spring break, and the earliest I could get them out of Green Bay (or nearby Madison) to Denver was Tuesday, three days later. Not an option. So I called airlines in Chicago to see what options there were. All of the flights were sold out until mid day Sunday, but United let me know that if I purchase a Y-class fare I could get on whatever flight I wanted, even if it was sold out. Good to know.
About three hours into my travel research, Julie called me. She tried looking for directions on her cell phone to the hospital in Green Bay, but wasn’t finding anything. Since I was at home, I could research a lot faster so I took a look. It turns out that the Children’s Hospital in Wisconsin is not in Green Bay; it’s in Milwaukee (2 hours away). What our doctor had seen was the address for an outpatient clinic associated with the Children’s Hospital. Green Bay is on the way to Milwaukee, so there was no extra travel incurred, but Madison was so non-responsive at that point Julie decided she couldn’t go any further without a doctor. They got off the highway in Green Bay and headed to the emergency room.
Green Bay was a good call. Not only did they have doctors, they had a neurosurgeon. And in a total coincidence, the doctor was the same one that place the shunt in Julie’s Uncle Bill (Alice’s husband) 20 years ago. Small world. Anyway, the doctor, agrees that Madison may have a shunt issue, but without a baseline to compare to its not possible to tell for sure. As bad as the Marquette scan might look, she may look like that all the time and just have the flu. Just to be safe and the shunt had failed, the doctor tapped Madison’s shunt and drained a small volume of fluid to try and relieve pressure. Right after the fluid was drained, Madison perked right up and started talking with Julie. Here she is drinking some milk with Alice.
So, it appeared more likely that the issue might be a shunt issue, but what was still unclear was whether it was a plugged shunt or if the setting of the valve was off. Madison has a magnetic shunt which has the benefit of being adjustable without having to do surgery. The down side is that if she gets near a magnetic field, there is a chance the valve could change its setting. The hospital in Green Bay didn’t use that type of valve, but there was a hospital across town that did. They contacted the other hospital and were able to borrow the device used to check the setting and adjust it if necessary. Still, the doctor felt Madison was an extremely complicated case and recommended we get her back to Denver to see her regular surgeon.
So, Julie and I decided to look at options for travel back to Denver. Julie asked the hospital to look into Flight for Life while I called the airlines again. I called United back and asked if I could get two tickets on the 6am from Chicago. They said no, the flight was booked. I said smartly, “but I’ll take a Y-class fare which will get me on any flight I want, right?”. “That’s true”, was the response, “unless the flight is sold out.” It seems I got wrong information, and the next available flight was at 2pm Sunday.
By this time, it’s close to midnight on Saturday and if Julie is going to make it to Chicago she’ll have to get moving. She hopped a cab from Green Bay to Chicago (four hours and not cheap) while I booked two first class tickets on the 2pm flight (really, really not cheap). The thinking was that if she had a full fare, first class ticket she would easily clear the wait list on the 6am. She got to Chicago around 4:30am on Sunday, and sure enough made it on the 6am flight.
Flight for life, by the way, came back at $18,000 which is why we decided against it. Our insurance would fly us to Milwaukee, where the closest children’s hospital was, but we wanted to get back to Denver. It wasn’t just us. The doctors in Marquette, the neurosurgeon in Green Bay, everyone recommended getting her back to her regular doctor. We have a whole new appreciation for how complicated her case is and how unique the treatment we are able to get right at home in Denver.
Back to the story, I picked up Julie and Madison at 8am at Denver International Airport and drove them to the Children’s hospital. Julie had given our doctors a heads up do expect us, and the ER was alerted. We arrived around 8:30 and were checked right in. Then things ground to a halt. By this time, Madison was alert and talkative, although she was not able still to keep any food down and had not slept in almost two days. Julie was exhausted by her all-nighter from Ishpeming to Denver, so after a brief reunion she went home to sleep. I stayed behind with Madison. Here I am singing her some songs to cheer her up.
Anyway, once the doctors saw she was awake, she quickly got deprioritized down the list of patients in the ER. By 11:30, we were still in the same room and Madison was still totally exhausted from the trip but too uncomfortable to sleep. She finally dozed off at 12:00 noon. At 12:15pm a hospital employee walked into the room and informed us that Madison was admitted and needed to move to her regular room immediately. I let the guy know that she had been up all night and just dozed off. Would it be possible to let her sleep for a while before we tried to move her? He let me know that was not possible and she had to move immediately. “So let me get this straight”, I said. “We sit here for four hours, but when you want to move her it’s suddenly urgent? I’m not buying it. Unless there is a bus accident and you need this room, we’re not going anywhere.” I’m not sure this guy was used to such push-back, and he agreed let us stay in the room until 1, “but we’d have to leave at that time, no exceptions.” I resisted the urge to ask, “or what?”
We went to our room, and got checked in to our “usual” ward on the 6th floor. At least it was familiar surroundings, although it had been over a year since our last visit. The next morning, Madison had an MRI and it looked like she may have an area of her brain that was not draining fluid as it should. By 4 that evening, she was in surgery. It’s strange to call it routine, but it was number 15.
Everything went fine. The thinking is that, while it may still have all been caused by just the flu, there was a catheter that may have stopped draining properly. The tube was replaced and by 5pm the next day (Tuesday), we were home.
Quite a weekend.
Madison has had a couple of follow-up MRIs since and things look at little worse, but stable. We’ll have another one later this summer before we travel again just to make sure.