Surgery Canceled due to Croup

We joke in our family that we really can't plan anything. Elin always has her own idea about the way things are supposed to play out. This surgery was no different. She has been REALLY sick with Croup or some other kind of terrible cold virus and she couldn't have surgery yesterday. We kept hoping she would pop out of this illness but it is not going away. I took her to the pediatrician on Tuesday and he gave her some steroids and a breathing treatment. She was on the mend for about 12 hours but has become sicker again. I will be taking her back to the doctor tomorrow if her fever doesn't go away.

The surgery will be rescheduled for 4-6 weeks out from now when she is fully recovered from this illness. It was severely disappointing to not be able to go through with the process. We went into the hospital yesterday and spent 2 hours waiting and prepping for surgery only to have the anesthesiologist tell me that the risks out weigh the benefits and we should postpone. I wish they would have told me that prior to making all the arrangements and going to the hospital but the surgeon suggested we bring her in and see what they say. I have learned my lesson, next time I will call the hospital and get a solid yes or no before heading in if she is ill at all.

The silver lining of course is that we get to have Thanksgiving with our family but it will be a short visit given Elin's continued illness.

So we still need healing thoughts and we are trying our best to get our little one well again.

Happy Thanksgiving and remember to share with your family the many things we all have to be thankful for.

Thanksgiving surgery

Since the last blog post Elin has had more bouts with seizures. We spent one night in the ICU in late October and just spent 5 hours in the ER yesterday. We were at Children's for her pre-op appt yesterday and she had 4 seizures in 2 hours so we headed straight from her appointment to the ER. Both times we have been admitted she has come in the ER doors seizing, not breathing and blue so we get rushed back to the "big" room immediately. I chalk this up to Elin being impatient; she simply doesn't want to wait in the ER waiting room so we just "come in hot" as I have been calling it.

Against our will a new tradition of spending Thanksgiving in SCH is beginning. Last year we were in the ICU during Thanksgiving and this year we will most likely be staying the night Wednesday night after surgery hoping to go home on Thursday. Of course, even if we are home Elin's head will be wrapped and I'm not sure she will be able to go anywhere.

We were able to get her MRI scheduled but it had to be on the 25th, hence the hospital stay. It's been a bit of a battle trying to coordinate all the different departments (neurology, imaging, otolaryngology) to get the procedure scheduled. So once they gave me the date I said sure, let's just get it done.

Elin's new straps for her AFO's

Elin's implant in her head has moved forward from where the surgeon had originally placed it. During the original surgery they drill a "well" in the skull and recess the implant in the well. The bone starts to grow over the implant and it holds it in place. Well Elin's skull was too thin at the time of implantation to drill a very deep well so her implant has shifted. She also has had a growing "lump" on her right forward side of her implant. We have watched it carefully but over the last few months it has tripled in size and she seems to be irritated by it. We are concerned it is causing her pain and we were worried about what might be causing it. Implants can be rejected if the body decides to get rid of it.

We met with the surgeon yesterday to discuss what the procedure will look like on Wednesday. They will put her under anesthesia, remove the magnet, take her to the MRI, bring her back and then they will deal with the implant issues. Our surgeon thinks the bump is an abscess caused by an internal stitch not fully disintegrating after her original surgery. He plans to drain it and after he does that he can asses how far the implant has moved and if he wants to attempt to move it back. We could be looking at a short surgery or a really long surgery depending on what he decides needs to be done once he has "cut her open." Unfortunately there are a lot of risks associated with both removing the magnet and moving the device. The device could be compromised- that would be terrible. We are hoping for the best.

So we don't know if we will be home for Thanksgiving and even if we are home what shape our family will be in.

We wish everyone a Happy Thanksgiving and please send thoughts and prayers our way for this to be a quick and relatively painless procedure of our little girl.

Make sure you toast to good health this holiday- it really is the most important thing.