...and more.

Everything was indeed canceled today, but I think I've finally resolved the insurance issue. I'm waiting for neurosurgery to contact the insurance and have them (finally) authorize all the procedures. Once they have an authorization they will give me a final date and time for everything. However, they have blocked off Feb. 9th for the surgery. Pending any more complications with the insurance, it will most likely be happening then.

I know that I have completely bored you with all of this insurance nonsense, so here are some pictures.

New Rules. Humphrey now has to stay on his bed when Mad is eating. Otherwise his snout is all up in her food. She thinks it's hilarious and throws food down to him. We're trying to break the cycle. You can't really see it in this picture but there is a giant slobber hanging off his mouth.

She's figured out where the food comes from. Every time I ask her what she wants to eat she points to the condiments.

Staying stylish at the zoo.

We are excited that Uncle Kyle and Aunt Karen are still coming down to visit this weekend! And they get to hang out with Mad while she's not in the hospital...even better!

Surgery Unscheduled?

I am so tired and angry from dealing with the ongoing battle with insurance. I was finally given a subscriber number today, and immediately called neurosurgery so that they could get an authorization number for the scans that were scheduled for tomorrow, and the surgery on Thursday. This evening neurosurgery called me back with the news that Children's hospital is not covered under our new insurance. I had specifically looked up Children's hospital to make sure that they were a provider under this insurance plan, and they were. It turns out that, in turning our paperwork in (the original problem was that someone at the UC didn't do their job and submit the paperwork), we were assigned an arbritrary medical plan group. One that we did not choose, and one that does not cover Children's hospital. The surgery and tommorow's procedures had to be canceled. I am so angry with the bullshit bureaucracy, and people not doing their job. It does not need to be this difficult. It is hard enough as it is.

I called the insurance and after crying on the phone to them they will be able to change us to the correct group and even add our current pediatrician as the new primary care physician. I have no idea if this means that we can procede with all of our appointments tomorrow or not. At this point I don't even think that we can go to our routine clinic appointment, because it may not be covered. The crazy thing is, because we have CCS (a secondary insurance specifically for California children with life-threatening conditions) if we didn't have insurance at all, we would be totally covered by CCS and everything could proceed as planned. Since we do have primary coverage, CCS won't pay anything until the primary pays for something, and they won't because it's not under their stupid plan.

I'm ready to stick sharp things in my eyes. Dealing with this is making me crazy.

The good news is that this surgery is not an emergency, and it won't affect Madeleine at all to have it delayed by a week or two. It is just so frustrating.

Madeleine walks

As promised, here is the video of Madeleine walking. She is getting better and better at it every day!

Surgery Scheduled

Madeleine's surgery will be next Thursday, the 29th. I'm glad to have a date as that makes it that much closer to having it over and done with. We're really hoping that this will be her last surgery. On Tuesday she has the MRI followed by a CT scan, preceded by a clinic visit for labs and urine. It will be a busy day. I'm not too thrilled about having her sedated twice in one week, but I suppose this is the way that it has to be.

In the middle of scheduling all of this Neurosurgery called to get our new insurance information. I had spent a good deal of time on the phone with our insurance company trying to get a policy number or something to tell the billing people. Apparently, even though we signed up online and everything is supposed to be automatic, we won't be able to get into the system for 4-6 weeks. We are currently covered but can't get any information from the company in order to actually BE covered for this surgery. I told neurosurgery all of this and she said that in that case they would be billing us the $50-60,000 directly. Great. Thank you. Tomorrow begins the renewed battle with insurance. I'm wondering if stepping up the hysterics will get me anywhere.

Steps

Madeleine's MRI has been scheduled on three different dates, so I'm really not sure when it will be. Most likely the end of January. The MRI people called to give me a date, clinic then called and said that it wasn't what they needed so it was canceled and rescheduled. MRI people called again with a new date. I thought everything was set but then Neurosurgery called and left me a message with a completely different date. Argh! Of course Monday is a holiday so I can't get it all straightened out until Tuesday.

Meanwhile, Mad took a bunch of steps yesterday!! Of course when we tried to get it on camera this is what happened:




I'll try to get an actual video of her walking in the next few days. If she'll do it again.

Baby Steps

The appointment with the neurosurgeon went well yesterday. He wants to get another MRI, and from that create a 3D model of the area to be operated on. Apparently this will make the surgery shorter, easier, and more precise. We have to wait for insurance to authorize the MRI, then for the MRI to be scheduled. Once she actually has the scan we'll have to have another appointment with the neurosurgeon AND THEN the surgery can be scheduled. At this rate we're looking at June!

Dr. Levy also helped to allay my concerns about her lack of walking. He said that the nerves are still growing, and will continue to grow for about a year and half after being cut. He was glad to see that she has a lot of movement in the upper part of her right leg, as the nerves reconnect at the top of the leg first. So it makes sense that the foot/ankle is still weak. He said to just give it time and that there was no need to worry about orthopedics yet. I'm feeling a lot better about that now.

The waiting, it kills me

I apologize for the lack of updates, but there isn't much going on in the land of Madeleine.

She's being a typical 14-month old, I suppose. Curious about how things work, generally happy and occasionally prone to shrieking.

I am becoming increasingly worried about her lack of walking. She is still gaining strength in her right leg, but it is no where near the same as the left. She free stands fairly often, but won' t really take any steps on her own. When she does walk (with support) it's very lopsided and she needs support on her right side. She also tends to walk on the inside or outside of her right foot, with her ankle completely turned inwards or outwards. I know that she'll be walking when her leg and foot are healed and ready to support her, I just don't know how much extra support it will take to get to that point.

We have an appointment with the neurosurgeon on Tuesday and I should know more about the upcoming surgery then.

ER Trip - Don't Worry, It Ends Well.

The night before last was epically horrible in terms of sleep. Mad was up constantly with what we thought was teething pain. In the early morning, she vomited a couple of times but finally slept for a couple of hours.

In the morning she was still vomiting, and we discovered that she had a fever and was so sleepy. Tylenol was given and she napped throughout the day. In the evening when the Tylenol wore off we discovered she had a temperature of 102. In a healthy child this isn't that much to be concerned about, but we've had it drilled into our brains that if she has a temp over 101, we need to call the doctor. She's not currently on chemo, so I wasn't sure that this was still the protocol to follow. Her hickman line can very easily get infected and we were all concerned that this might be the case. I called the doctor on call at the hospital (and amazingly it was our doctor). She told us to go to the ER to get it checked out. So we took our first trip to the ER last night. On the way there we joked that the ER is the one part of the hospital that we hadn't seen yet.

Once we got there we were taken immediately to an ER room and after seeing various doctors and nurses they had blood drawn and bagged her for urine (oh the joys of waiting for your child to pee...). In the end all the tests came back fine and it turns out that she has a viral thing, just like anyone else can get.

Today she seems to be feeling much better, and doesn't have a fever at all. This was her first fever, and the ER doctors were amazed that we haven't been in there before, given her history.