Long overdue updates

I don't know how many times I have come to update, only to realize I have no idea where to start. There is SO MUCH going on in the Garden!

I guess I'll start where I left off.

Here we are, 4 1/2 months into 2015 and our life is not looking the way I pictured it. There are already surprises, changes of direction, and "Oh my gosh!" moments that cannot be anticipated years in advance. Thankfully Dean and I are pretty "go with the flow" people!

In February I posted about an upcoming surgery Abel and Audrey would be having. The same exact surgery for both of them. Audrey needed one knee and both ankles fixated, and Abel need both knees and both ankles. The surgery went well, the recovery a bit interesting.

Abel's surgery was done first. Given his history of being very combative when coming out of anesthesia the staff had Dean and I go back to the recovery room long before he was awake. Ours were the first voices he heard and the first faces he saw when he opened his eyes. He didn't complain much about pain (and he is one of our kids who DOES tell us when he is in pain.) A short time later they told us Audrey was starting to wake up in the next cubicle so Dean went to be with her, since she is a total Daddy's girl!

We had driven separate, thinking that one of us (probably me) would go home with Abel who was ready first. It is always good to be flexible with your plans! HA! Abel said he had to use the bathroom so Dean and I wheeled him over. The dr. said there were no restrictions and he could stand and walk if he tolerated it. Dean and I each stood on one side of him holding him under the arms as he stood up pretty quickly…and promptly fainted. And then threw up.

There was no walking after that.

When Audrey was done and ready to go home she was not at all willing to bear weight, so we wheeled them both out to the van and got everyone loaded in. Abel constantly looking like he was going to pass out or throw up. It took both of us to get Abel into the house and to the couch, but it didn't take more than an hour before he started hobbling around, and throwing up anything we tried to give him. Within a couple of days he was walking normally again.

Audrey was another story. It took her nearly a week before she was willing to put weight on her legs. Her right ankle was swollen for days, but even when it went down we couldn't get shoes on because they rubbed on the incision.  Her foster family in Serbia had sent Serbian house slippers along. They are much more flexible and zip up the side. They are cut just right so they didn't rub on her incision at all. Three weeks out there are still some mornings when she's a bit stiff and sore but once she's up and moving she's fine.

The kids have check ups with the orthopedic surgeon this week for X-rays and to check progress. I'm curious what he has to say about the occasional swelling that Audrey has. With all of this I decided even if they're ready at the same time, there is NO way we are doing the four weeks of casting ankle to hip at the same time. Having two, simultaneously, who could not bear any weight was too much for this mom. Lesson learned!

Phone Calls

Today was about being on the phone, playing tag with various service providers.

First was the genetic counselor. I need to find out my risks for breast cancer, as well as whether or not I have the BRCA 1 and/or 2 genes. These are the genes that cause breast cancer as well as several other types of cancer. While talking with the nurse she mentioned "You will also be going over your stroke risks." Umm yeah. Significant family history of stroke. We'll be meeting on Monday next week.

Next up was Angela's insurance provider. You know, she is 18 now. Things change at 18. Who knew? She has been assigned a TBI/Stroke care case manager who will be coming out for a visit. I don't even know exactly what for. With all the changes that have been made to healthcare there are a lot of services being cut so I hope it is nothing related to that!

And then there was the call to Children's Hospital of Boston. If you're new here, we live in Minnesota but Angela sees a specialist in Boston to manage her Cricopharyngeal Achalasia. This is a very rare disorder and there is nobody local who will treat it so Mayo sent us to Boston. Anyway, Angela needs to be seen again. Because it is out of state, it takes quite awhile to get this all arranged so I'm starting on it now with hopes of having her there in October or so.

I also called Amplatz Children's hospital to get Audrey scheduled for her MRI. Axel has an upcoming check up with his spine surgeon at Shriners in Philadelphia, and we need to get this done to determine if Audrey needs to be seen at the same time. I'm hoping to get this done around the first week of August. If only I could have gotten it scheduled, but it never seems to be that easy. I should hear back from them tomorrow.

Last were my two surgeons. One is the surgeon who did my lumpectomy. I wanted to talk with him about a mastectomy and get all the necessary details so I can make a decision. I'm waiting for them to call me back with an appointment date. The other is the plastic surgeon to discuss options for reconstruction. I have had work done by her before and I really like her. I've also seen pictures of her breast reconstruction work on women who had radical mastectomies done and I like what I see. Especially considering if I decide on mastectomy it won't be a radical procedure, meaning I would have much "cleaner" site to work with as well as more skin.

The afternoon was spent with the kids at therapy and getting some much needed stuff done, but thats another blog post! 

Decisions made

The title of this post makes it sound like we had a choice as to weather or not Axel needed surgery. We knew going into this, when we first found out a few weeks ago, that there would be no choice. Axel needs surgery...soon...to repair the instability in his neck.

Dr. Samdani showed me from the MRI we had done a couple weeks ago where the problem is. (and I had seen it myself, since I downloaded the program so I could look at the scans myself. LOL Those who know me will not be surprised by that.) There is an area where the C1 vertebrae is pressing against the cord, interfering with the Cerebrospinal fluid (CSF) That means the CSF in the brain is low as well. It's unusual that Axel hasn't complained of headaches at all...that we know of since how would he tell us?

The biggest question is what do we do with his TEETH? 

Dr. Samdani, the surgeon, confirmed what I was thinking. They do NOT want ANY type of infection in his body when they do this surgery since it would put his brain and spinal cord and  at risk.

We need to get his dental work done as soon as possible, using fiberoptic intubation (I didn't know there was such a thing!) Surgery to have his spine fused can be done 4 weeks later. So, the very soonest we'll be looking at doing his spinal fusion is the end of March.

There is  GOOD NEWS too! When the little kids have this done, they usually have a piece of bone taken from the hip, which is used to screw everything together since there isn't enough bone otherwise. Because Axel is older and has more bone, they will probably be able to use synthetic bone replacement (I can't remember the name of it) which makes for a faster recovery. 

Also, with little kids they are usually in a traditional halo with pins in their head for 6 months.  This is because they don't have enough bone to support all the screws and hardware. Because Axel is older and has more bone, he will probably not need a traditional pinned halo. The doctor said he won't know for sure until he gets into surgery and can actually see the bones for himself. So, Axel will come out of surgery either in a traditional pinned halo, a non-invasive halo (it is MUCH more comfortable for the child, and doesn't leave the scar from pins, but is more of a pain to care for the child because you can't even wash their hair.) or...the best possibility...just a neck brace! 

If he has to have the traditional halo, it will only be for a few weeks and then he'll be switched to a non-invasive halo or brace which will stay on for 6 months. 

Oh, and Axel got a new brace today which looks much more comfortable for him. 

So to wrap it all up:

1) Get dental surgery done at home using fiber optic intubation.

2) Do neck surgery in Philadelphia.

3) intensive care for 2-5 days after surgery, then in a regular room for several more days. "Home" to the hotel for about a week before returning home to Minnesota. 

Now, we're going to go find some dinner, and try to get rid of the migraine I have. Please pray tomorrow's flight home is uneventful. My migraines usually last 3 days, plus the ear trouble I have flying. Oh....Please Lord, work a miracle on my head!