Sunday, July 5, 2009

Crazy Week

I hope everybody had a great fourth! We took Brynlee to the fireworks. She loved all of the people. All she kept doing the whole time was saying hi, hi, hi, and waving. We went with our friend Dave and it was so cute because she just wanted Dave to hold her. She is also into making everybody laugh. She is such a little ham it cracks me up. So anyway that was our 4th of July.

The beginning of our week was hell for me. A couple of weeks ago Brynlee got a bunch of little broken blood vessels on her right leg. The next week they were on her other leg as well. So Friday I stopped the Albuterol and decided I would call her Ped on Monday. So Monday rolls around and I called Dr. Jackson's office. They were really busy that day so she wanted us to come in first thing Tue. morning. She also just thought it was a bruise of some kind. So we went in Tue. morning. She asked me a bunch of questions like if we have had her in her stander more than normal or if her routine had changed at all. I told her no to all these questions and then she asked to see her legs. When she saw her legs she said that it was a good thing I brought her in because this wasn't what she was envisioning over the phone. She said they were definitely broken blood vessels and that it might be some kind of auto-immune disease. We went and got blood work taken and went home to wait out the results. When they took her blood though the tourniquet broke a bunch of the blood vessels down her right arm. Meanwhile I was freaking out thinking she cant handle another disease. They finally called that night to say that some of her labs were on the low side but nothing to worry about. Her iron is finally coming up to so I was excited about that.
So the next morning I get a call from Dr. Jackson saying that she had also sent of some other labs and she had just gotten the results back. She said that they were very concerning and that Brynlee could be bleeding internally. She wanted me to take Brynlee to the ER at primary's immediately. I asked her if we were probably going to be there for a couple days and she said yes this is serious. They were thinking that the VPA might be causing a problem.
So I Packed Brynlee up and went to primarys. All I was thinking was the drug that is making her better is killing her!
We got in there and they said that the broken blood vessels were called pitikei(SP). They usually see it with sepsis. So they took more blood work and her labs looked a lot better. Dr. Swoboda and Abby came in to talk to us( We sure do love those guy). We decided that since her labs were better that we wouldn't take her off of the VPA. We are also thinking that it could just be some kind of Virus? I don't know but if her vessels keep breaking then we are going to take her off of the VPA. This whole thing just makes me sad, because Brynlee has been one of the great responders to this medication. So anyways we will see what next week brings.


Ashley said...

You poor things! This SMA stuff is just torture. No other way to put it.

Praying Brynlee will continue to do better so she can stay on VPA!

The Gustafson Family said...

WE will keep her in our prayers. I hope the broken blood vessels stop! Sorry it was such a rough week, but happy you got to enjoy and celebrate Independence Day!

Sapna said...

How scary! I hope everything works out okay and that it is not the VPA! Thinking of you the way, we are set to be back in SLC Sept 17-18. Maybe we can meet up!

Melodie said...

CRAP! poor Brynlee.. that's not what she needs ! I will faithfully pray that this was just a fluke and that her labs trend towards normal so that she can stay on the VPA.
So happy she got to enjoy the firworks :) XOXO lots of LOVE

MarliO said...

Maybe you mean petechiae? Just thought it would make it easier for you to learn about them if you could Google the correct spelling.

Glad you enjoyed the Fourth and that you have such a wonderful medical team. Best wishes.

Whit, Lindsey, and Jonas said...

Oh man, I'm am so sorry! I hope that things get figured out. We will be waiting for an update, Hopefully the hospital stay is not long. Our prayers are with you and little Brynlee!